lunes, 2 de abril de 2012

EURORDIS ► NEW MEMBERS

New members 


EURORDIS welcomes new members

Full members

Batten Disease Family Association
UK
Represents: Batten disease

Cystinosis Foundation of the UK
UK
Represents: cystinosis

Fabry Support & Informatie Groep Nederland
Netherlands
Represents: Fabry disease

National Association of phenylketonuria (PKU) and similar inherited metabolic disorders (DMP)
Czech republic
Represents: phenylketonuria

Associazione Italiana Miastenia e Malattie Immunodegenerative - Amici del Besta onlus
Italy
Represents: Myasthenia gravis

Vereniging Spierziekten Nederland - Dutch Association For Neuromuscular Disease
Netherlands
Represents: Muscular dystrophy

Assocciazione Persone con Malattie Reumatiche - APMAR Onlus
Italy
Represents: rare (Scleroderma, Sjogren disease) and not rare auto immune rheumatic diseases

Associate members

Barretstown Serious Fun
Ireland
Summer camp

Pro Rare Austria, Allianz für seltenen Erkrankungen
Austria
Umbrella organisation

Sobrevivire vzw
Belgium
Umbrella organisation
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