Judit Varadine Csapo’s younger son was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD) 10 years ago.
After the genetic testing of the family, Judit Varadine Csapo learnt that she also is affected by the same disease. At the time, there was no information about rare diseases in Hungarian and no patient organisation in Hungary.
Subsequently, she founded Angyalszarnyak, the Hungarian Muscle Dystrophy Association. With approximately 500 members, the association aims at informing patients in Hungarian and helping them to find each other.