Testimonials

Activities, Sponsors and Testimonials

Families, patients, doctors, Italians and foreigners researchers, as well as eminent personalities from the culture, entertainment and sport world join to the Association.

Thanks to the support of an updated scientific library, and the commitment of volunteers, parents, doctors and specialist particularly trained in the B.I.R.D. Institute are given information about diagnostical centers, rehabilitation sevices and care centers.

Parents and patients through the Association have the opportunity to create contacts each other and unique collaborations, in any part of Italy they reside.

The information service allowed to almost all Italian and foreign families with Lesch-Nyhan disease, Metachromatic Leukodystrophy, Spinal Muscular Atrophy, Amyotrophic Lateral Sclerosis, Tay Sachs, APECED …. to aggregate and adhere to the Association.

The commitment of the Association is also to direct and support scientific research in the field of rare diseases which is neglected by the pharmaceutical industry, because it is considered not so profitable.

The need to improve the knowledge in this field was immediately recognize by the Association. So it were established two prestigious international competitions for research projects related to “Autoimmune Diseases” and “Gene Therapy”. These competitions lead to the possibility to increase knowledge on these diseases for young promising researchers. The rare diseases are considered the “frontier of medicine”. In addition the Association has financed and still funds a number of important projects for the treatment of rare diseases  in particular the Project for the therapy of metachromatic leukodystrophy, the Lesch-Nyhan Project and the SMA Project.

Mayors and administrators from all over Italy, sensitized by the families of patients belonging to the Rare Disease Association, as well as testimonials such as Fabio Fazio, Maurilio De Zolt, Deborah Compagnoni, Cristian Ghedina, Gelindo Bordin, Barbara Cola, Carla Fracci, Beppe Menegatti, Gino Bartali, Paolo Rossi, Antonio Cabrini, Vicenza Calcio, Calcio Sampdoria, Genoa Football, Famila Basket and numerous other contribute financially to reach great achievements.

The Association for Rare Diseases carries out its activities thanks to donations and contributions from individuals, organizations and other associations that have understood the importance of the undertaken actions. Some of the sponsors are: the Group Famila Iperfamila, A & O, Nardini Grappa, Fincantieri, the Poste Italiane, Agenzia Navale Tripcovich, Piaggio, API, Associazione Artigiani, Lions Clubs, Innerwell Club, CIF, Cariverona, Banca Popolare Vicentina, Credito Italiano, Marina Militare Italiana, Cities of Venice, Vicenza, Genoa, Albissola, Caorle, Jesolo, Parma, Collecchio, Vaiano, Lonigo, Asiago, Roana, Gallio, Enego, Cafasse, Trieste, Pontedera, Isca Marina, Vibo Valentia, Cefalù, Augusta, Alberobello, Pizzighettone, Stationary, Rottingdean, Thiene, Schio, Viadana and others.

Lot of associations of patients and donors such as FIDAS, AVIS, ADMO, AIDO, continue their collaboration with the Association.

Numerous media have dealt with the Association, including RAI DUE: “I Fatti Vostri”, “Italia in Diretta”, “TG2 Salute”; RAI UNO: “Domenica In”; RAI TRE: “Quelli che il calcio”; RAI TRE Regione, Antenna tre, Channel Cinque with: “Verissimo”; TVA Vicenza, Tele Liguria, Tele Toscana, Rete Quattro, Tele Chiara, RTL, RAI radio UNO, Panorama, Donna Moderna, La Repubblica, Il Secolo XIX, L’Avvenire, Il Gazzettino, Famiglia Cristiana, Star Bene, Salute, Il Corriere della Sera, Vera and others.

The experience gained over more than ten years of activity in the field of assistance and research, has allowed us to understand how great is the lack of knowledge in the field of diagnosis and therapy for these diseases. For these reasons the Association has founded a specific Institute for the Diagnosis, Research and Care for the people affected by rare disease.

 

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