Ear Bleeding From Hurt

you loved a party to the letter to the regions promoted by the Group GIFTS FOR PATIENTS RIGHTS NOT RARE and many groups and associations of rare diseases

Subscribe to the petition to the regions for the recognition of rare diseases are still excluded from Annex 1 of Decree 279/01

February 28, 2011 As you know, our Association was among the promoters of the initiative "Rights, not rare gifts for the sick" for the recognition of rare diseases still excluded from 1 of the DM 279/01 (see ). Now
associations have decided to write a letter of petition to the regions to apply for an extension of the list of rare diseases excluded from 1 to 109. The letters will be sent to the governments and the Department of Health for all Italian regions, the Ministry of Health and the Institute of Health - National Center for Rare Diseases, on 28 February, the fourth World Day of rare diseases.
Read the motives of the initiative
Read the full text of the letter of petition

If you share the initiative, we invite you to sign la petizione sull'apposito modulo on line , ricordando che la siringomielia è una delle 108 malattie escluse dall'esenzione.

Di seguito i link ad alcuni articoli usciti sulla stampa in merito all'iniziativa dell'invio delle lettere alle Regioni:
La Stampa, 21 febbraio 2011
Osservatorio Malattie rare, 22 febbraio 2011
Sanitànews, 22 febbraio 2011

http://www.aismac.org/news_206.php
AISMAC Onlus partecipa alla battaglia per le 109 a sostegno della siringomielia e delle altre 108 malattie rare non ancora riconosciute a livello nazionale