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
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: / / 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
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