Skinny Legs Alcoholism

X REPORTING FORMAT SINGLE PATHOLOGY

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Campaign for Rare Diseases unrecognized

Rights Not Gifts for Sick Rare

dirittinonregaliperimalatirari@gmail.com

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.

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