Thursday, 10/03/2011 we sent to all the Regions and the Minister for the joint letter registered letter with an attached CD with all the 6412 signatures.
We will keep you informed of any replies you receive.
Saturday, March 12, 2011
Nose Pirecing Mustard Oil
SENT TO ALL THE REGIONS AND THE MINISTRY OF THE JOINT LETTER
Thursday, 10/03/2011 we sent to all the Regions and the Minister for the joint letter registered letter with an attached CD with all the 6412 signatures.
We will keep you informed of any replies you receive.
Thursday, 10/03/2011 we sent to all the Regions and the Minister for the joint letter registered letter with an attached CD with all the 6412 signatures.
We will keep you informed of any replies you receive.
Uv Light Features On License
proof that you sent an individual report of their disease to the regions
to all associations / groups that want to send the alert to individual regions of their disease, we ask you to give us proof that you sent in writing dirittinonregaliperimalatirari @ gmail.com
to all associations / groups that want to send the alert to individual regions of their disease, we ask you to give us proof that you sent in writing dirittinonregaliperimalatirari @ gmail.com .
When you want to publish your report on this page oppure su facebook Diritti non Regali per i Malati Rari , potrebbe essere molto utile per tutti.
Grazie!
Wednesday, March 9, 2011
Recognize Breitling Real
SUPERNADO.IT - Become a permanent non-approved that initiative on Rare Diseases
"Nomadism diagnostic" absence of care at centers Reference that does not exist, lack of social protection / welfare at school or at work: in a word, thousands of people who undergo a total exclusion compared to those who have a rare, but recognized .
These - according to the promoters of the blog-rights Gifts for Sick Rare - the main consequences of the failure to include many in the National List of Rare Diseases identified ten years ago by ' Annex 1 of the Ministerial Decree 279/01 and these are also the reasons which had prompted a number of groups and associations, at the recent Day International Rare Disease of February 28 from applying directly to Regions , who are in - or at least those falling into situations of return of the budget - recognize individual more rare diseases, compared to those included in 'National List, as well as, moreover, has already been done, for example, in Piedmont, Tuscany and Emilia Romagna (Of this initiative is widely read in our website by clicking here ).
From these considerations, then, was the idea of \u200b\u200ba joint letter and be addressed to the regions, to request the inclusion in their lists of all rare diseases not yet recognized at the national level. And that letter was just sent on March 4 last regional governments and the various Regional Departments of Health, but also to the Ministry of Health, Institute of Health, the National Look for Rare Diseases and UNIAMO -FIMR (Italian Federation for Rare Diseases).
Significant results already achieved: in less than a month, in fact, in support of the document, arrived well 6400 signatures (as of March 6), what he did consider it appropriate to keep open the initiative, making it even Permanent . Anyone wishing to then report a new disease or just want to add your membership, you can still do it, by contacting the promoter blog ( dirittinonregaliperimalatirari@gmail.com ). (SB)
Diventa permanente quell'iniziativa sulle Malattie Rare non riconosciute
Si tratta della lettera inviata alle Regioni nell'ambito di una campagna per le Malattie Rare non riconosciute, promossa dal blog Diritti non Regali per i Malati Rari. Numerosi gruppi e associazioni, infatti, che si occupano di patologie non inserite nell'Elenco Nazionale delle Malattie Rare, hanno chiesto direttamente alle Regioni di farlo all'interno dei your list. And for the support 6,400 signatures have already arrived, what did think of making permanent the initiative, allowing anyone to report a new disease or simply to join
"Nomadism diagnostic" absence of care at centers Reference that does not exist, lack of social protection / welfare at school or at work: in a word, thousands of people who undergo a total exclusion compared to those who have a rare, but recognized . These - according to the promoters of the blog-rights Gifts for Sick Rare - the main consequences of the failure to include many in the National List of Rare Diseases identified ten years ago by ' Annex 1 of the Ministerial Decree 279/01 and these are also the reasons which had prompted a number of groups and associations, at the recent Day International Rare Disease of February 28 from applying directly to Regions , who are in - or at least those falling into situations of return of the budget - recognize individual more rare diseases, compared to those included in 'National List, as well as, moreover, has already been done, for example, in Piedmont, Tuscany and Emilia Romagna (Of this initiative is widely read in our website by clicking here ).
From these considerations, then, was the idea of \u200b\u200ba joint letter and be addressed to the regions, to request the inclusion in their lists of all rare diseases not yet recognized at the national level. And that letter was just sent on March 4 last regional governments and the various Regional Departments of Health, but also to the Ministry of Health, Institute of Health, the National Look for Rare Diseases and UNIAMO -FIMR (Italian Federation for Rare Diseases).
Significant results already achieved: in less than a month, in fact, in support of the document, arrived well 6400 signatures (as of March 6), what he did consider it appropriate to keep open the initiative, making it even Permanent . Anyone wishing to then report a new disease or just want to add your membership, you can still do it, by contacting the promoter blog ( dirittinonregaliperimalatirari@gmail.com ). (SB)
-rights Rare Gifts for the sick is a blog (accessible by clicking here ) which contribute many associations Sick of Rare . The Letter to the Regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01, in a uniform manner throughout the country, mentioned in the document This text is available by clicking here to it and can adhere all associations and groups of rare diseases are not recognized by clicking here .
Last Updated (Tuesday, 8 March 2011 17:16)
Brazilian Wax In Ottawa Ontario
HEALTH 'HEALTH NEWS RARE - OVER 6400 SIGNATURES TO SUPPORT THE CAMPAIGN FOR THE RARE DISEASES DISALLOWED
| OLTRE 6400 FIRME A SOSTEGNO DELLA CAMPAGNA PER LE MALATTIE RARE NON RICONOSCIUTE |
| 07 March 2011 | |
| La Lettera alle Regioni per chiedere l’inserimento nei propri Elenchi Regionali di tutte le Malattie Rare ancora non riconosciute a livello nazionale, promossa da molti gruppi-associazioni di malattie rare aderenti alla Campagna per le Malattie Rare non riconosciute "Rights not rare gifts for the sick," was sent on March 4 last year to regional governments and regional departments of Health and the Ministry of Health. In less than a month have been collected over 6400 signatures in support of this initiative for the recognition and award of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01. Anyone wishing to report a new disease, or simply wish to add your membership, please write to: dirittinonregaliperimalatirari@gmail.com to view. The Letter to the Regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01 is available by clicking on this link . |
Sunday, March 6, 2011
How Much Postage To Mail A Thank You Note
Instructions for reporting a single pathology.
Campaign for Rare Diseases unrecognized
Rights Not Gifts for Sick Rare
Istruzioni per segnalazione singola Patologia
-Utilizzare la pagina word originaria ,lasciando nell’intestazione in alto il logo della barchetta e il riferimento al blog Diritti non Regali;
-A: va inviata a tutte le regioni (chi reperisse altri indirizzi mail è pregato di segnalarlo);
-CC: va inviata all’ ISS (due mail: una all’ ISS ed una alla dr.essa Taruscio) + ai 2 numeri di fax del Ministero Salute e del Centro Nazionale Rare;
-build: The format corresponds to a "base grid" provide to the National Center for Rare. So it must be respected in the essential points. Therefore: the black parts are left virtually unaltered for all, while parts in blue should be adapted to individual pathology ;
-do not forget to leave a delivery: mail group / association where to be contacted and add any logo in the footer of your group / association;
-i 2 fax must be signed material (eg who send and / or by a representative group / association).
THE REPORTING FORMAT FOR SINGLE PATHOLOGY You can download the following link:
Skinny Legs Alcoholism
X REPORTING FORMAT SINGLE PATHOLOGY
The disease involves:
- list of sorrows, problems and limitations (including questions of social life), examinations, therapies, drugs. L 'lack of recognition of the disease, also entails serious problems in terms of labor relations and - for those who are of school age-in terms of' educational assistance, since there are lack of protection and rights normally associated with coded carriers of disease.
Head: indicate how many cases in Italy, you know what suffering from the disease. Indication of whether this percentage is comparable the rate at international level.
DOWNLOAD FORMAT:
https: / / docs.google.com/document/d/1a_LOUh5vxZOltAr_gcaKwUjODjCag4vrb_XbewxcqWQ / edit? hl = en & authkey = CKOKoecK
A: urp@pec.regione.abruzzo.it , quintacommissione@regione.abruzzo.it , marco.arcieri @ regione.basilicata. it , dg_sanita@regione.basilicata.it , rocco.vita@regione.basilicata.it , mariano.pici@regione.basilicata.it , antonino.Orlando@regcal.it , c.merante@regcal.it , nazzareno.salerno@consrc.it , ferdinando.aiello@consrc.it , antonella.stasi@regcal.it , seg.presidente@regione.campania.it , protocollo.generale@consiglio.regione.campania.it , quintacommissione@consiglio.regione.campania.it , schiano.mic@consiglio.regione.campania.it , petrone.ann@consiglio.regione.campania.it , segreteriapresidente@regione.emilia-romagna.it , sanita@regione.emilia-romagna.it , PresCommIV@regione.emilia-romagna.it , presidente@regione.fvg.it , ass.sanita.pol.soc@regione.fvg.it , giorgio.venierromano@regione.fvg.it , massimo.blasoni@regione.fvg.it , presidente@regione.lazio.it , amandarelli@regione.lazio.it , nobili@regione.lazio.it , grodano@regione.lazio.it , presidente.giunta@regione.liguria.it , ass.salute@regione.liguria.it , segrcommIII@regione.liguria.it , roberto_formigoni@regione.lombardia.it , Luciano_Bresciani@regione.lombardia.it , margherita.peroni@consiglio.regione.lombardia.it , stefano.galli@consiglio.regione.lombardia.it , segreteria.presidenza@regione.marche.it , segreteria.sanita@regione.marche.it , francesco.comi@assemblea.marche.it , giancarlo.danna@assemblea.marche.it , presidente.iorio@regione.molise.it , assessore.passarelli@mail.regione.molise.it , direttoregeneraleV@regione.molise.it , presidenza@regione.piemonte.it , segreteria.ferrero@regione.piemonte.it , luca.pedrale@consiglioregionale.piemonte.it , nino.boeti@consiglioregionale.piemonte.it , segreteria.presidente@regione.puglia.it , segreteria.salute@regione.puglia.it , terza.comm@consiglio.puglia.it , marino.leonardo@consiglio.puglia.it , friolo.maurizio@consiglio.puglia.it , mazza.patrizio@consiglio.puglia.it , presidenza@pec.regione.sardegna.it , san.assessore@pec.regione.sardegna.it , 7comm.sanita@consregsardegna.it , segreteriagabinetto@regione.sicilia.it , assessore.sanita@regione.sicilia.it , glaccoto@ars.sicilia.it , mfalcone@ars.sicilia.it , enrico.rossi@regione.toscana.it , daniela.scaramuccia@regione.toscana.it , m.remaschi@consiglio.regione.toscana.it , s.mugnai@consiglio.regione.toscana.it , presidente@regione.taa.it , martha.stocker@region.tnst.it , presidente@consiglio-bz.org , richard.theiner@provincia.bz.it , presidente@regione.umbria.it , buconi.massimo@crumbria.it , valentino.rocco@crumbria.it , urp@regione.vda.it , segretario_generale@regione.vda.it , sanita_politichesociali@regione.vda.it , azucchi@consiglio.regione.vda.it , dempereur@consiglio.regione.vda.it , presidenza@regione.veneto.it , assessore.coletto@regione.veneto.it , com.com5.segreteria@consiglioveneto.it , progsanitaria@regione.veneto.it , Mara.Tessaro@regione.veneto.it
Cc: segreteriafazio@sanita.it , a.grimaldi@sanita.it , dp.segreteria@sanita.it , segr.dipqual@sanita.it , malattierare@iss.it , domenica.taruscio@iss.it , presidenza@iss.it , me.congiu@sanita.it , info@consultanazionalemalattierare.it , gedeone_baraldo@regione.lombardia.it , presidente@uniamo.org , daina@marionegri.it , raredis@marionegri.it , cmid@iol.it
https: / / docs.google.com/document/d/1a_LOUh5vxZOltAr_gcaKwUjODjCag4vrb_XbewxcqWQ / edit? hl = en & authkey = CKOKoecK
Campaign for Rare Diseases unrecognized
Rights Not Gifts for Sick Rare
A: urp@pec.regione.abruzzo.it , quintacommissione@regione.abruzzo.it , marco.arcieri @ regione.basilicata. it , dg_sanita@regione.basilicata.it , rocco.vita@regione.basilicata.it , mariano.pici@regione.basilicata.it , antonino.Orlando@regcal.it , c.merante@regcal.it , nazzareno.salerno@consrc.it , ferdinando.aiello@consrc.it , antonella.stasi@regcal.it , seg.presidente@regione.campania.it , protocollo.generale@consiglio.regione.campania.it , quintacommissione@consiglio.regione.campania.it , schiano.mic@consiglio.regione.campania.it , petrone.ann@consiglio.regione.campania.it , segreteriapresidente@regione.emilia-romagna.it , sanita@regione.emilia-romagna.it , PresCommIV@regione.emilia-romagna.it , presidente@regione.fvg.it , ass.sanita.pol.soc@regione.fvg.it , giorgio.venierromano@regione.fvg.it , massimo.blasoni@regione.fvg.it , presidente@regione.lazio.it , amandarelli@regione.lazio.it , nobili@regione.lazio.it , grodano@regione.lazio.it , presidente.giunta@regione.liguria.it , ass.salute@regione.liguria.it , segrcommIII@regione.liguria.it , roberto_formigoni@regione.lombardia.it , Luciano_Bresciani@regione.lombardia.it , margherita.peroni@consiglio.regione.lombardia.it , stefano.galli@consiglio.regione.lombardia.it , segreteria.presidenza@regione.marche.it , segreteria.sanita@regione.marche.it , francesco.comi@assemblea.marche.it , giancarlo.danna@assemblea.marche.it , presidente.iorio@regione.molise.it , assessore.passarelli@mail.regione.molise.it , direttoregeneraleV@regione.molise.it , presidenza@regione.piemonte.it , segreteria.ferrero@regione.piemonte.it , luca.pedrale@consiglioregionale.piemonte.it , nino.boeti@consiglioregionale.piemonte.it , segreteria.presidente@regione.puglia.it , segreteria.salute@regione.puglia.it , terza.comm@consiglio.puglia.it , marino.leonardo@consiglio.puglia.it , friolo.maurizio@consiglio.puglia.it , mazza.patrizio@consiglio.puglia.it , presidenza@pec.regione.sardegna.it , san.assessore@pec.regione.sardegna.it , 7comm.sanita@consregsardegna.it , segreteriagabinetto@regione.sicilia.it , assessore.sanita@regione.sicilia.it , glaccoto@ars.sicilia.it , mfalcone@ars.sicilia.it , enrico.rossi@regione.toscana.it , daniela.scaramuccia@regione.toscana.it , m.remaschi@consiglio.regione.toscana.it , s.mugnai@consiglio.regione.toscana.it , presidente@regione.taa.it , martha.stocker@region.tnst.it , presidente@consiglio-bz.org , richard.theiner@provincia.bz.it , presidente@regione.umbria.it , buconi.massimo@crumbria.it , valentino.rocco@crumbria.it , urp@regione.vda.it , segretario_generale@regione.vda.it , sanita_politichesociali@regione.vda.it , azucchi@consiglio.regione.vda.it , dempereur@consiglio.regione.vda.it , presidenza@regione.veneto.it , assessore.coletto@regione.veneto.it , com.com5.segreteria@consiglioveneto.it , progsanitaria@regione.veneto.it , Mara.Tessaro@regione.veneto.it
Cc: segreteriafazio@sanita.it , a.grimaldi@sanita.it , dp.segreteria@sanita.it , segr.dipqual@sanita.it , malattierare@iss.it , domenica.taruscio@iss.it , presidenza@iss.it , me.congiu@sanita.it , info@consultanazionalemalattierare.it , gedeone_baraldo@regione.lombardia.it , presidente@uniamo.org , daina@marionegri.it , raredis@marionegri.it , cmid@iol.it
CC: web@iss.it \u0026lt;web@iss.it>
taruscio@iss.it
National Center for Rare Diseases
Fax 06 49 90 43 70
Ministry of Health
Fax 06 59 94 27 39
La presente fa seguito alla lettera comune alle Regioni , inviata il 4 marzo, per chiedere l’ inserimento nei registri regionali rare delle patologie rare non ancora in elenco nel registro nazionale, non aggiornato dal 2001. Abbiamo infatti aderito all’ iniziativa promossa da Diritti Non Regali per i Malati Rari.
Segnaliamo ora nello specifico, la nostra patologia, fornendo le informazioni del caso, comprovanti anche la rarità della medesima.
Siamo un gruppo di persone facenti capo a : nome gruppo/associazione
We are suffering from the disease pathology .....( name + any link of your site).
The disease involves:
- list of sorrows, problems and limitations (including questions of social life), examinations, therapies, drugs.
Gravity Clinical Pathology question .... (Information or not severe, degenerative or not, or not responding to medication routine, requires hospitalization or not, continuous monitoring or not). Indicate if changes were related illnesses that constitute a framework pluripatologico and if there are instances of familiarity.
Specify whether or not there surgical options.
Specify whether the presence or absence Reference Center (in Italy and all 'foreign) and / or projects about the disease. If they exist, to report on the possibility / difficulty of access and how to treat the disease. Specify if the disease needs to be treated at centers analgesic.
Specify the 'any degree of disability produced by disease and / or the limits to human relationships, to the realm of 'autonomy ....
treatment cost burden:
is comparable to the treatment already given for other diseases. This, from the standpoint of "taking charge" by the institution.
regard, however, the costs currently borne by patients, these are many: indicate therapies, drugs against as not recognized as associated with the disease, aids and media types (list) that at the time, they remain a 'option for those can cope with these liabilities.
The above infringes the right to protection of health, enshrined in the Constitution.
The lack of reference centers located throughout the territory, produces a nomadic diagnostic exhausting for patients and corrosive to the system costs (repeated examinations / performance, lack of coordination).
L 'lack of recognition of the disease, also entails serious problems in terms of labor relations and - for those who are of school age-in terms of' educational assistance, since there are lack of protection and rights normally associated with coded carriers of disease.
This creates discrimination against carriers of disease recognized.
The lack of recognition also penalizes the pathology of the possibilities of funding dedicated in 'field of research.
also penalizes training, initial and ongoing, health professionals, with inevitable negative impact on patients and system costs.
Head: indicate how many cases in Italy, you know what suffering from the disease. Indication of whether this percentage is comparable the rate at international level.
scientific literature concerning the pathology brief list of reference links
- Specify if and where the disease is already recognized and / or classified (NORTHERN ORPHANET ).
-Specify whether the disease has already been reported (all 'ISS, the Ministry of Health, Regions) + any answers.
absence in preparation for updating the National Register of Rare, since the relevant measure context (the revision of the LEA) has long been blocked by the Treasury, we turn to the regions as territorial and institutional realities of reference for the protection of public health, to ask the 'insertion of the disease in their respective Regional Register Rare diseases, with a specific exemption code region, so that patients who are afflicted with the same treatment and get the same protection of persons with a rare disease recognized.
We remain at your disposal for further information.
group name, signature of the representative link / reference addresses.
SCARICA IL FORMAT:
https://docs.google.com/document/d/1a_LOUh5vxZOltAr_gcaKwUjODjCag4vrb_XbewxcqWQ/edit?hl=en&authkey=CKOKoecK
Saturday, March 5, 2011
Before Getting Your Legs Waxed
Request for recognition and award of a Regional Code of Exemption for Rare Diseases not yet available in Annex 1 of Ministerial Decree 279/01 A: Regional governments and regional departments of Health PC: the Ministry of Health ; Institute of Health; Consulta Nazionale Malattie Rare; UNIAMO FIMR
---------- Messaggio inoltrato ----------
Da: Diritti non Regali per i Malati Rari
< dirittinonregaliperimalatirar i@gmail.com >
Date: March 4, 2011 21:25
Subject: Letter to the Regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of the DM 279/01
A: urp@pec.regione.abruzzo.it , quintacommissione @ region. abruzzo.it , marco.arcieri @ region. basilicata.it , dg_sanita@regione.basilicata. it , rocco.vita @ regione.basilicata. it , mariano.pici @ region. basilicata.it , antonino.Orlando@regcal.it , c.merante@regcal.it , nazzareno.salerno@consrc.it , ferdinando.aiello@consrc.it , antonella.stasi@regcal.it , seg.presidente@regione. campania.it , protocollo.generale@consiglio. regione.campania.it , quintacommissione@consiglio. regione.campania.it , schiano.mic@consiglio.regione. campania.it , petrone.ann@consiglio.regione. campania.it , segreteriapresidente@regione. emilia-romagna.it , sanita@regione.emilia-romagna. it , PresCommIV@regione.emilia- romagna.it , presidente@regione.fvg.it , ass.sanita.pol.soc@regione. fvg.it , giorgio.venierromano@regione. fvg.it , massimo.blasoni@regione.fvg.it , presidente@regione.lazio.it , amandarelli@regione.lazio.it , nobili@regione.lazio.it , grodano@regione.lazio.it , presidente.giunta@regione. liguria.it , ass.salute@regione.liguria.it , segrcommIII@regione.liguria.it , roberto_formigoni@regione. lombardia.it , Luciano_Bresciani@regione. lombardia.it , margherita.peroni@consiglio. regione.lombardia.it , stefano.galli@consiglio. regione.lombardia.it , segreteria.presidenza@regione. marche.it , segreteria.sanita@regione. marche.it , francesco.comi@assemblea. marche.it , giancarlo.danna@assemblea. marche.it , presidente.iorio@regione. molise.it , assessore.passarelli@mail. regione.molise.it , direttoregeneraleV@regione. molise.it , presidenza@regione.piemonte.it , segreteria.ferrero@regione. piemonte.it , luca.pedrale@ consiglioregionale.piemonte.it , nino.boeti@consiglioregionale. piemonte.it , segreteria.presidente@regione. puglia.it , segreteria.salute@regione. puglia.it , terza.comm@consiglio.puglia.it , marino.leonardo@consiglio. puglia.it , friolo.maurizio@consiglio. puglia.it , mazza.patrizio@consiglio. puglia.it , presidenza@pec.regione. sardegna.it , san.assessore@pec.regione. sardegna.it , 7comm.sanita@consregsardegna. it , segreteriagabinetto@regione. sicilia.it , assessore.sanita@regione. sicilia.it , glaccoto@ars.sicilia.it , mfalcone@ars.sicilia.it , enrico.rossi@regione.toscana. it , daniela.scaramuccia@regione. toscana.it , m.remaschi@consiglio.regione. toscana.it , s.mugnai@consiglio.regione. toscana.it , presidente@regione.taa.it , martha.stocker@region.tnst.it , presidente@consiglio-bz.org , richard.theiner@provincia.bz. it , presidente@regione.umbria.it , buconi.massimo@crumbria.it , valentino.rocco@crumbria.it , urp@regione.vda.it , segretario_generale@regione. vda.it , sanita_politichesociali@ regione.vda.it , azucchi@consiglio.regione.vda. it , dempereur@consiglio.regione. vda.it , presidenza@regione.veneto.it , assessore.coletto@regione. veneto.it , com.com5.segreteria@ consiglioveneto.it , progsanitaria@regione.veneto. it , Mara.Tessaro@regione.veneto.it
Cc: segreteriafazio@sanita.it , a.grimaldi@sanita.it , dp.segreteria@sanita.it , segr.dipqual@sanita.it , malattierare@iss.it , domenica.taruscio@iss.it , presidenza@iss.it , me.congiu@sanita.it , info@ consultanazionalemalattierare. it , gedeone_baraldo@regione. lombardia.it , presidente@uniamo.org , daina@marionegri.it , raredis@marionegri.it , cmid@iol.it
PC: Ministry of Health, National Institute of Health, the National Rare Diseases; UNIAMO FIMR
GIFTS FOR PATIENTS 'RIGHTS NOT RARE
---------- Messaggio inoltrato ----------
Da: Diritti non Regali per i Malati Rari
< dirittinonregaliperimalatirar
Date: March 4, 2011 21:25
Subject: Letter to the Regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of the DM 279/01
A: urp@pec.regione.abruzzo.it , quintacommissione @ region.
Cc: segreteriafazio@sanita.it , a.grimaldi@sanita.it , dp.segreteria@sanita.it , segr.dipqual@sanita.it , malattierare@iss.it , domenica.taruscio@iss.it , presidenza@iss.it , me.congiu@sanita.it , info@
A: Regional Governments and Regional Councillor Health
PC: Ministry of Health, National Institute of Health, the National Rare Diseases; UNIAMO FIMR
Subject: Request for recognition and award of a Regional Code of Exemption for Rare Diseases not yet found in Annex 1 of Ministerial Decree 279/01
Please find enclosed:
"Letter to the Regions to seek recognition and allocation of a Regional Code Exemption for rare diseases are not yet included in Annex 1 of Decree 279/01 "
we will supplement this e-mail with the documents described above and list of signatures (about 6000) to support and join our initiative, by registered mail, A / R.
In waiting for your much appreciated feedback please accept my best regards.
Rights Not Gifts for Sick Rare
Campaign for rare diseases are not recognized
-
http:// dirittinonregaliperimalatirari . Blogspot.com / http
: / / www.facebook.com/ # / group.php ? gid = 285019897530
: / / www.facebook.com/ # / group.php
Can I Exfoliate Psoriasis
6412 firme per la Lettera Comune alle Regioni
Together we can, Elsa Aimone
the joint letter to the Regions to ask
's entry rare in the regional registers of all rare diseases are not yet listed in the National Register, was sent yesterday: the signatures are 6412 people belonging to various associations.
L 'initiative is open and will become permanent.
So whoever you are reporting a new disease, or simply wish to add your membership, you can leave a post on this blog, or send email to:
Thursday, March 3, 2011
Thinkpad T60 Audio To Tv
FLYERS TO DISTRIBUTE NEW CURIOSITY 'NEWS AND CHEMICAL SCIE HAARP
E' il primo di una serie di volantini semplici che sto creando da diffondere ovunque, legalmente non c'e' bisogno di nessuna autorizzazione poiche riportano la scritta "fip" e le dimensioni sono legali, questo va stampato in modo che ne stiano 2 in un foglio A4 normale da stampante. E nessuno puo' dirvi nulla.
Ho pensato all'importanza che puo' avere insistere sulle parole SCIE CHIMICHE- HAARO E IL SITO in modo che le persone si interessino e vadano a cercarne il significato su internet.
ciao max e buona diffusione
Wednesday, March 2, 2011
Brazilian Wax Men Ottawa
riunione 2.3.2011
Good evening to all.
Today the Commissioner has met with Trade Unions - sat at the table that UP also has signed on CCL Livingston.
The Commissioner reported that:
- Dr. Rino D'Aquino has never been director of finance control Fg holding as misspelled it on the website LVG (words that have been removed in the past days)
- You are using the same management that led to Livingston in recent months because it was found that the LVG problems were associated with the non payment of several million euro by fg holding company (other than insolvency - see Fan, etc. ..) and not by a voluntary mismanagement.
Dr Aquinas then referred to some points contained in the Plan B, which is now Plan A: Within 15 days we will know if we succeed in re-starting for the summer season with two A320 and then integrating the winter season with two A330 - (a directive Caribbean - a Directive Africa)
As already mentioned the old days the condition is the guarantee for 10 million euros (9.8 to be exact) from the state that will be also screened by the EU (estimated at 2 months for this)
L 'ultimate goal is still to sell the business within 6-12 months from the time of the restart to "settle" the "debt" of 9.8 million against the State.
To date there are no certainties on where to find the aircraft have been defined with any actual contracts TT.OO. The crew
index are estimated to be 4 to 8 for the A320 and A330.
We can therefore estimate that for the first two aircraft will be employed around 100 people total (drivers - aaavv - earth)
With regard to employment contracts of the company anticipates that will be discussed during meetings to be held hopefully in the next weeks. Same goes for the method of re-absorption of staff from CIGS.
The meeting today, unexpectedly and without warning was also attended by the Deut Martinoia with whom we had asked for a meeting several weeks. It 'was agreed to organize a incontro in sede separata nelle prossime settimane come da richiesta scritta. Sottolineiamo ancora una volta che l'intenzione di FILT CGIL è quella di fare in modo che tutti i dipendenti abbiano chiare le cifre e la metodologia applicata per il calcolo cigs e certo non criticare a prescindere il lavoro altrui.
Il Dt Martinoia ha comunque anticipato che entro metà marzo dovrebbe essere in grado di fornirci il prospetto creditizio - tfr
1%: come da accordi e come anticipato più volte nei nostri comunicati vi confermiamo che per tutti coloro si rivolgono allo studio legale cgil per insinuazione al passivo - la somma da versare è pari all' 1% del tfr recuperato - e nient'altro.
Causa Precari: Vi comunichiamo che in These days the first hearings are under way for the kids who wanted action against Livingston to enforce their right to have a permanent contract and then access the Cigs for all purposes. We will update you on the progress.
For the moment everything is available
RRSSAA FILT CGIL 
Good evening to all.
Today the Commissioner has met with Trade Unions - sat at the table that UP also has signed on CCL Livingston.
The Commissioner reported that:
- Dr. Rino D'Aquino has never been director of finance control Fg holding as misspelled it on the website LVG (words that have been removed in the past days)
- You are using the same management that led to Livingston in recent months because it was found that the LVG problems were associated with the non payment of several million euro by fg holding company (other than insolvency - see Fan, etc. ..) and not by a voluntary mismanagement.
Dr Aquinas then referred to some points contained in the Plan B, which is now Plan A: Within 15 days we will know if we succeed in re-starting for the summer season with two A320 and then integrating the winter season with two A330 - (a directive Caribbean - a Directive Africa)
As already mentioned the old days the condition is the guarantee for 10 million euros (9.8 to be exact) from the state that will be also screened by the EU (estimated at 2 months for this)
L 'ultimate goal is still to sell the business within 6-12 months from the time of the restart to "settle" the "debt" of 9.8 million against the State.
To date there are no certainties on where to find the aircraft have been defined with any actual contracts TT.OO. The crew
index are estimated to be 4 to 8 for the A320 and A330.
We can therefore estimate that for the first two aircraft will be employed around 100 people total (drivers - aaavv - earth)
With regard to employment contracts of the company anticipates that will be discussed during meetings to be held hopefully in the next weeks. Same goes for the method of re-absorption of staff from CIGS.
The meeting today, unexpectedly and without warning was also attended by the Deut Martinoia with whom we had asked for a meeting several weeks. It 'was agreed to organize a incontro in sede separata nelle prossime settimane come da richiesta scritta. Sottolineiamo ancora una volta che l'intenzione di FILT CGIL è quella di fare in modo che tutti i dipendenti abbiano chiare le cifre e la metodologia applicata per il calcolo cigs e certo non criticare a prescindere il lavoro altrui.
Il Dt Martinoia ha comunque anticipato che entro metà marzo dovrebbe essere in grado di fornirci il prospetto creditizio - tfr
1%: come da accordi e come anticipato più volte nei nostri comunicati vi confermiamo che per tutti coloro si rivolgono allo studio legale cgil per insinuazione al passivo - la somma da versare è pari all' 1% del tfr recuperato - e nient'altro.
Causa Precari: Vi comunichiamo che in These days the first hearings are under way for the kids who wanted action against Livingston to enforce their right to have a permanent contract and then access the Cigs for all purposes. We will update you on the progress.
For the moment everything is available
RRSSAA FILT CGIL
Monday, February 28, 2011
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Il TG3 Leonardo del 28 febbraio 2011 ha dedicato un breve servizio alla lettera comune ed alla patologia "cisti di Tarlov"
How To Get Golden Cross On Mw2
LA VERSIONE AGGIORNATA 28/02/2011 DELLA LETTERA COMUNE ALLE REGIONI
Here is the updated version of the joint letter today to the regions, with all diseases reported so far by the respective associations and groups.
Rosaria Vavassori : Good Day for Rare Diseases "at all!
Here is the updated version of the joint letter today to the regions, with all diseases reported so far by the respective associations and groups.
Please check the list of diseases and Notify any possible inaccuracies or omissions. Thanks!
to all associations / groups who are collecting their signatures to the Letter to the regions, remember that there is time until tonight to do it.
Serina Miss Hooters December
BUS-AMERICA - IRAQ
fonte : http://articles.cnn.com/2002-09-27/politics/bush.war.talk_1_homeland-security-senators-from-both-parties-republican-phil-gramm?_s=PM:ALLPOLITICS
CNN
President Bush has raised harsh criticism Thursday at the Senate on homeland security issues, but has revised his speech to say "there are senators that are good for both parties deeply about our country. " ( you first Bush administration, just think of the war )
And, in discussing the threat posed by Iraqi President Saddam Hussein, Bush said: "After all, this is the guy who tried to kill my father." (And not without reason )
As usual Bush disapproves of the Senate from doing the nail on the usual threat of terrorism (created by him)
Ma Bush torna giù dando spinta alla sua critica.
Ha detto che, nel considerare la sua proposta di creare un Dipartimento della Sicurezza ,
( quale sicurezza? una scusa per spostare in Iraq altre forze militari )
il Senato vuole "microgestire il processo. Vogliono dirigere il ramo esecutivo ... cosa si puo noleggiare, chi può sparare, chi può trasferirsi lì.. .. io non ho intenzione di accettare questo ".
Come esempio, Bush ha detto che, a causa delle pressioni dei sindacati, la normativa in esame al Senato vieterebbe al governo in carica e di personale di sicurezza di indossare rivelatori di radiazione portatili. Egli ha anche detto in the Senate bill would require job assignments based on seniority, "without talent"
"The enemy ( but if you are the enemy dear Bush? ) does not care about these rules - the Senate does what wants, and bothers me, "Bush said .
He did not use the word" democratic "or noted that the Democrats control the Senate. And after listing his criticism, Bush said:
"Now do not get me wrong, there are good senators from both parties who care deeply that our country". But he also urged the Senate to "not allow the interest to drive details of the process. "
Bush praised lawmakers of both parties to collaborate with him on the understanding of that a congressional resolution authorizing the use of force against Iraq ." This is not a partisan issue, "Bush said.
He also said that if the United Nations fails to adopt a tough resolution , then" the United States will lead a coalition and engage with Iraq and force it to disarm outside of any new UN mandate. ( as always nNazioni together and look at those who want to kill America )
Bush was speaking at a Houston fundraiser for the Texas Attorney General John Cornyn, the Republican candidate for U.S. Senate seat being vacated by Republican Phil Gramm.
Houston is the adopted hometown of president's father, former President Bush, in discussing the threat posed by Saddam, the current president offered his basic list of complaints to challenge the United Nations in Iraq and His assertion that Iraq is working aggressively in chemical and biological nuclear weapons programs. "This is a man who lies all the time," said Bush ( and let us say Bush is no joke to shoot big ).
He said that the 'hatred for the Iraqi leader has been largely directed by the United States and added: ". After all, this is the guy who tried to kill my father" (ARE MANY REASONS TO BE want to do BUT THIS IS ALL FOR YOU)
In his September 12 speech to the UN in Iraq, Bush cited the plot to kill a former president of the United States, but said it was his father . The alleged assassination attempt took place when former President Bush visited Kuwait during the Clinton administration. The former president had orchestrated the US-led coalition that drove Iraqi forces from Kuwait in Persian Gulf War ....( maybe he forgot to mention this)
max 
fonte : http://articles.cnn.com/2002-09-27/politics/bush.war.talk_1_homeland-security-senators-from-both-parties-republican-phil-gramm?_s=PM:ALLPOLITICS
CNN
President Bush has raised harsh criticism Thursday at the Senate on homeland security issues, but has revised his speech to say "there are senators that are good for both parties deeply about our country. " ( you first Bush administration, just think of the war )
And, in discussing the threat posed by Iraqi President Saddam Hussein, Bush said: "After all, this is the guy who tried to kill my father." (And not without reason )
As usual Bush disapproves of the Senate from doing the nail on the usual threat of terrorism (created by him)
Ma Bush torna giù dando spinta alla sua critica.
Ha detto che, nel considerare la sua proposta di creare un Dipartimento della Sicurezza ,
( quale sicurezza? una scusa per spostare in Iraq altre forze militari )
il Senato vuole "microgestire il processo. Vogliono dirigere il ramo esecutivo ... cosa si puo noleggiare, chi può sparare, chi può trasferirsi lì.. .. io non ho intenzione di accettare questo ".
Come esempio, Bush ha detto che, a causa delle pressioni dei sindacati, la normativa in esame al Senato vieterebbe al governo in carica e di personale di sicurezza di indossare rivelatori di radiazione portatili. Egli ha anche detto in the Senate bill would require job assignments based on seniority, "without talent"
"The enemy ( but if you are the enemy dear Bush? ) does not care about these rules - the Senate does what wants, and bothers me, "Bush said .
He did not use the word" democratic "or noted that the Democrats control the Senate. And after listing his criticism, Bush said:
"Now do not get me wrong, there are good senators from both parties who care deeply that our country". But he also urged the Senate to "not allow the interest to drive details of the process. "
Bush praised lawmakers of both parties to collaborate with him on the understanding of that a congressional resolution authorizing the use of force against Iraq ." This is not a partisan issue, "Bush said.
He also said that if the United Nations fails to adopt a tough resolution , then" the United States will lead a coalition and engage with Iraq and force it to disarm outside of any new UN mandate. ( as always nNazioni together and look at those who want to kill America )
Bush was speaking at a Houston fundraiser for the Texas Attorney General John Cornyn, the Republican candidate for U.S. Senate seat being vacated by Republican Phil Gramm.
Houston is the adopted hometown of president's father, former President Bush, in discussing the threat posed by Saddam, the current president offered his basic list of complaints to challenge the United Nations in Iraq and His assertion that Iraq is working aggressively in chemical and biological nuclear weapons programs. "This is a man who lies all the time," said Bush ( and let us say Bush is no joke to shoot big ).
He said that the 'hatred for the Iraqi leader has been largely directed by the United States and added: ". After all, this is the guy who tried to kill my father" (ARE MANY REASONS TO BE want to do BUT THIS IS ALL FOR YOU)
In his September 12 speech to the UN in Iraq, Bush cited the plot to kill a former president of the United States, but said it was his father . The alleged assassination attempt took place when former President Bush visited Kuwait during the Clinton administration. The former president had orchestrated the US-led coalition that drove Iraqi forces from Kuwait in Persian Gulf War ....( maybe he forgot to mention this)
max
Handcuffs Sorority Initiation
SOSTIENI LA RICHIESTA DI FIE - GRUPPO FAMIGLIE DRAVET PER IL RICONOSCIMENTO DELLO STATO DI MALATTIA RARA PER LA SINDROME DI DRAVET/EPILESSIA MIOCLONICA SEVERA DELL'INFANZIA
FIE to subscribe Dravet's Syndrome, along with other Associations of rare diseases, a letter to the Regions urging the recognition of rare diseases are currently not yet recognized by the National Health Service. To reinforce the request will be sent, together with the letter, the lists with the names (accompanied mail address or telephone number) of all persons who wish to support the cause.
All persons who wish to support the request for recognition of Dravet syndrome as a rare disease may send an email to famigliedravet@fieonlus.net .
Nella mail dovrà essere inserito come oggetto PER SINDROME DI DRAVET MALATTIA RARA e nel testo Chiedo di inserire il mio nominativo ed il mio indirizzo mail............../oppure numero di telefono ...................nella petizione alle Regioni per chiedere il riconoscimento e l’attribuzione di un Codice di Esenzione Regionale per le Malattie Rare non ancora inserite nell'Allegato 1 del DM 279/01, in modo uniforme su tutto il territorio nazionale. 
 |
| FIE-ITALIAN FEDERATION EPILEPSY |
-
February 28 2011 WORLD OF RARE DISEASES
FIE to subscribe Dravet's Syndrome, along with other Associations of rare diseases, a letter to the Regions urging the recognition of rare diseases are currently not yet recognized by the National Health Service. To reinforce the request will be sent, together with the letter, the lists with the names (accompanied mail address or telephone number) of all persons who wish to support the cause.
All persons who wish to support the request for recognition of Dravet syndrome as a rare disease may send an email to famigliedravet@fieonlus.net .
Nella mail dovrà essere inserito come oggetto PER SINDROME DI DRAVET MALATTIA RARA e nel testo Chiedo di inserire il mio nominativo ed il mio indirizzo mail............../oppure numero di telefono ...................nella petizione alle Regioni per chiedere il riconoscimento e l’attribuzione di un Codice di Esenzione Regionale per le Malattie Rare non ancora inserite nell'Allegato 1 del DM 279/01, in modo uniforme su tutto il territorio nazionale.
Sunday, February 27, 2011
How To Potty Trail A Min Pin
NLS
the contents of this post are subject to copirygt each part shall not be collected except with the written permission of the blog
I would like to explain why some people add to their NLS image, does not imply appartenenzza groups or cla, absolutely not, and 'a way to stand out from myriad of people on the internet ..
OSCERCI, join forces http://nonlosai.ning.com .
the contents of this post are subject to copirygt each part shall not be collected except with the written permission of the blog
bottom right of the photo
I would like to explain why some people add to their NLS image, does not imply appartenenzza groups or cla, absolutely not, and 'a way to stand out from myriad of people on the internet ..
THAT THERE IS A SYMBOL \\ makes you RECOGNIZE A GLANCE,
ANYONE HAVE FRIENDS OF ALL, THE NATURE OF THE ENVIRONMENT, THE , WAKE UP, THOSE WHO HELP OTHERS ARE PATIENTS, AND ARE INTENDED ONLY AS altruism TO THE NEXT AND ARE AWARE OF EVERYTHING 'IS HAPPENING SUCKS AND OF THE NWO, mind control, chemtrails, WAVES ISSUED BY HAARP, SHORT, HAVE ALL THIS INFORMATION THAT hard to find in TV, and I want in an appropriate manner, to help spread this knowledge. News Vere, (there are unfortunately many disinformatori, molti egocentrici e speculatori che specialmente su internet cercano di forviare le masse) SIAMO RISVEGLIATI ED OGNI COSA LA FACCIAMO NEL TENTATIVO DI AIUTARE NEL RISVEGLIO ANCHE TUTTI GLI ALTRI in maniera del tutto disinteressata, ogni nostra azione e' puro volontariato e il simbolo NLS racchiude tutto questo .
TUTTI QUELLI CHE VOGLIONO UNIRSI , NON SOLO QUANDO SAREMO DISTACCATI DA QUESTO COMPUTER BIOLOGICO CHE CI PORTIAMO CON NOI IN QUESTA VITA, IL NOSTRO CORPO, MA ANCHE ORA CON TUTTI GLI ALTRI , UNITI ASSIEME IN UN UNICA GRANDE FORZA ANTI DIVISIONE puo' farlo in qualsiasi momento, se sinceramente si sente and is reflected in those few words, just add the symbol that I prefer to define it as a medal deserved:
JOIN THE INSIGNIA OF A SMALL S and you can not add it to ask me, I will help 'to put it without problems! do so, hello to everyone.
AND 'THE FIRST STEP FOR THE UNION GROUP EVEN IF YOU HAVE A GROUP YOU WILL FIND YOUR ROOM TO MOVE YOUR GROUP TO BE CONTROLLED BY THIS SITE AND ANY INFORMATION TO A PLACE WHERE ALL FREE TOGETHER WE CAN ORGANIZE EVENTS, GROUPS, FORUMS, BLOGS, CHAT WITH 
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AGGIORNAMENTI
Good morning everyone.
Updates:
SASN
report to those who were not already aware that SASN of Genoa, without his having been informed of the status of employees CIGS Livingston, does not render medical assistance when the staff concerned. We reported it in the company, we should ricevere notizie al riguardo quanto prima. - chiederemo delucidazioni nell'incontro di mercoledì.
ESENZIONE TICKET:
Anche per quanto riguarda l'esenzione Ticket, rendiamo noto a tutti che abbiamo ricevuto diverse segnalazioni da colleghi che diverse strutture esigono il saldo delle prestazioni effettuate inizialmente previa "esenzione" di pagamento "causa" cigs.
PIANO B - DALLA STAMPA SI APPRENDE:
Martedì scorso abbiamo avuto un incontro all'Enac e uno al ministero dello Sviluppo economico, dove abbiamo rappresentato la nostra volontà di ripartire in autonomia non essendosi concretizzate le manifestazioni di interesse". Così dichiara a questa agenzia di stampa Pellegrino D'Aquino, to Livingston, stating that "the claim was formalized and the Monitoring Committee met in the presence of Commissioner Daniel Disciple authorized the submission of a strategic plan." The hypothesis is that of a soft re-start already for the summer, "with a short-haul Airbus 320 and 330 for a long time. It would be a first step, while the real one would restart next winter." Now the management is finishing the business plan, which will be shown Wednesday in a meeting with the unions. "On the permissions, as regards the guarantee of the state and the green light from Brussels - D'Aquino says - it would wait for an average time of one to two months. After the delivery will be immediate. "With regard to the requested budget," will be a bit 'under € 10 million, "says the manager, adding that this support" has always included a limited period of time, that does not come a year " . It follows, therefore, the hypothesis that transfer has not been filed, but simply shifted over time: "Easier to sell the asset if it is business."
SR41: We remind all who have not yet done delivered as soon as the SR41.
Other issues already known will be discussed during Wednesday's meeting between trade unions and the Commissioner.
Buona Domenica.
RRSSAA FILT CGIL 
Good morning everyone.
Updates:
SASN
report to those who were not already aware that SASN of Genoa, without his having been informed of the status of employees CIGS Livingston, does not render medical assistance when the staff concerned. We reported it in the company, we should ricevere notizie al riguardo quanto prima. - chiederemo delucidazioni nell'incontro di mercoledì.
ESENZIONE TICKET:
Anche per quanto riguarda l'esenzione Ticket, rendiamo noto a tutti che abbiamo ricevuto diverse segnalazioni da colleghi che diverse strutture esigono il saldo delle prestazioni effettuate inizialmente previa "esenzione" di pagamento "causa" cigs.
PIANO B - DALLA STAMPA SI APPRENDE:
Martedì scorso abbiamo avuto un incontro all'Enac e uno al ministero dello Sviluppo economico, dove abbiamo rappresentato la nostra volontà di ripartire in autonomia non essendosi concretizzate le manifestazioni di interesse". Così dichiara a questa agenzia di stampa Pellegrino D'Aquino, to Livingston, stating that "the claim was formalized and the Monitoring Committee met in the presence of Commissioner Daniel Disciple authorized the submission of a strategic plan." The hypothesis is that of a soft re-start already for the summer, "with a short-haul Airbus 320 and 330 for a long time. It would be a first step, while the real one would restart next winter." Now the management is finishing the business plan, which will be shown Wednesday in a meeting with the unions. "On the permissions, as regards the guarantee of the state and the green light from Brussels - D'Aquino says - it would wait for an average time of one to two months. After the delivery will be immediate. "With regard to the requested budget," will be a bit 'under € 10 million, "says the manager, adding that this support" has always included a limited period of time, that does not come a year " . It follows, therefore, the hypothesis that transfer has not been filed, but simply shifted over time: "Easier to sell the asset if it is business."
SR41: We remind all who have not yet done delivered as soon as the SR41.
Other issues already known will be discussed during Wednesday's meeting between trade unions and the Commissioner.
Buona Domenica.
RRSSAA FILT CGIL
Saturday, February 26, 2011
Linsey Dawn Mckenzie Blog
Lettera alle regioni per il riconoscimento delle malattie rare non inserite nel DM 279/01 terms for membership
Lettera alle regioni per il riconoscimento delle malattie rare non inserite nel DM 279/01 
Lettera alle regioni per il riconoscimento delle malattie rare non inserite nel DM 279/01
Ge Nautilus Not Draining
Ipoh-Onlus
http://www.metropolisweb.it/Multimedia/Servizi http:/ / www.metropolisweb.it / Multimedia / Services / storie_testimonianza_persone_affette_malattie_rare.aspx / storie_testimonianza_persone_affette_malattie_rare.aspx 
not Rights Gifts for Sick Rare
 |
| metropolis web |
http://www.metropolisweb.it/Multimedia/Servizi http:/ / www.metropolisweb.it / Multimedia / Services / storie_testimonianza_persone_affette_malattie_rare.aspx / storie_testimonianza_persone_affette_malattie_rare.aspx
Blood Tongue Brushing
AISMAC AISMAC - Onlus - Italian Association, a non-profit, people with Chiari malformation 1 (AC1) and / or syringomyelia (SM) and related pathologies
greet all those who have joined the 'beginning of the letter to City Regioni, nata nel novembre 2010 da un gruppetto ristretto di persone , portatrici di patologie diverse. L' iniziativa sta ottenendo adesioni al di là di ogni nostra previsione, grazie al tam-tam della rete ed ad alcuni articoli su giornali.
Pertanto spediremo comunque la lettera entro il termine stabilito, che ha anche una valenza simbolica, coincidendo con la giornata internazionale malattie rare, ma l' iniziativa rimarrà aperta a quanti vorranno successivamente aderire ed alle patologie rare via via emergenti cui desideriamo indicare questa direzione se riterranno di percorrerla.
Così intendiamo procedere a successivi re-invii, man mano che si aggiungano nuove adesioni.
Per Tarlov-Italia, Elsa Aimone
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