On the 5th of October, 2018 a seminar about rare diseases “From the rare diagnose to the prolonged treatment” was held. The event took place in Kyustendil city in lyceum “Bratstvo” on Otets Paisiy №11 and it lasted from 11:00 until 16:00 o’clock. There was a discussion about the innovations in diagnostic and treatment of Familial amyloidal polyneuropathy, also rehabilitation for people with rare diseases in Macedonia, Gaucher’s diseases in Macedonia and about the only one in Eastern Europe – The Rare Diseases Institute. On each subject talked a representative and expert in the sphere.
Patient Organization for Turner Syndrome in Bulgaria
The Italian neuromuscular registry