SCOPE OF THE PROJECT
The EmpoweRARE project was created by the Bulgarian Huntington Association and is carried out in close partnership with FRAMBU Resource Center for Rare Disorders, with financial support from Iceland, Liechtenstain and Norway, through the European Economic Area Grants (EEA Grants).
Challenges people with rare diseases face in Bulgaria:
Lack of information leads to lack of empowerment
Lack of treatment and follow-up care
Lack of social services, tailored towards people with rare diseases
Rare diseases are not address by any national or local strategy for development of social services or long-term care
How this project will help:
The EmpoweRARE project aims to contribute towards addressing these social issues by employing comprehensive measures, targeted specifically at empowering people with rare diseases. The measures aim to facilitate civic engagement for reforms in social policies and strengthen bilateral relations between the donor states and Bulgaria.