The teams behind the project
Bulgarian Huntington Association
The Bulgarian Huntington Association began as an effort to create a community of support, understanding and care for families affected by Huntington's Disease in 2014. Shortly after, we expanded our support and services to people with other rare diseases, when we realized there was also a striking lack of care and support available to people with other rare conditions.
After 5 years and many initiatives undertaken, we have become an organization we are truly proud to be members of.
We do our best to keep growing and evolving, so we can offer more specialized help and support to the many families affected by rare diseases in Bulgaria.
FRAMBU Resource Center for Rare Disorders
Frambu is a private nongovernmental organization and provides a meeting place for people diagnosed with rare diseases, their families and professional service providers. The goal of Frambu is to enable children, adolescents, adults, and their families to better cope with a rare disease and to live in harmony with their conditions, aspirations and needs.
The Centre has more than 25 years of experience to gather, develop and disseminate knowledge of rare and unfamiliar disabilities to persons with a rare disease, their families and professionals. Frambu provides these services to more than 500 different rare diagnoses. This is done through a comprehensive and targeted course program, consultations and guidance, documentation, research and developmental work. Frambu is nationwide and offers services to people with a rare disease of all ages.