National association of patients with mitochondrial diseases
The Association was established in December 2019 as a non-profit legal entity for public benefit and is registered in the Commercial Register and the Register of Non-profit Legal Entities with the UIC 205933240.
The members of the Board of the association are:
- Lyubomir Yordanov Malamov, Chairman
- Boryana Stoyanova Stoyanova
- Tsveta Petrova Ivanova-Yonkova
In 2020 the association became a member of the International Mito Patients (https://www.mitopatients.org/).
At the beginning of 2022 a representative of the association became a patient advocate in the European Reference Network for Neuromuscular Diseases (ERN EURO-NMD https://ern-euro-nmd.eu/) and participated in the mitochondrial disease group of the network.
In November 2022 the association became a member of EURORDIS, the European Organisation for Rare Diseases (https://www.eurordis.org/).
In April 2023, the association became a founding member of the Rare Diseases Bulgaria Association, which in July of the same year became the representative organization from Bulgaria in the EURORDIS Council of National Alliances.