Bulgarian Huntington Association
Bulgarian Huntington Association is a non-profit association established in 2014 and aims to create a community and space for understanding and care for people affected by Huntington’s disease and other rare neurological diseases.
MISSION & VISSION
Our mission is to improve follow-up care for people living with rare diseases and their families and to create specialized programs and centers where families can receive information, training and services that improve their quality of life. Our vision is for a society where people living with rare diseases and their families are integrated and supported to live in the best possible way according to their own potential and capabilities. We are guided by values such as respect, trust solidarity, social justice, equality, innovation, partnership, because “disease may be rare, but care should not be.”
GOALS AND ACTIVITIES
Our goals and activities are related to:
– upholding the right of people living with rare diseases and their families to access information, resource training, non-medical care and specialized social services and palliative care, through initiatives to empower vulnerable groups;
– creating sustainable programs to provide free office, mobile and online care (psycho-social services and rehabilitation) to improve patient independence and home care;
– building resource centers for psycho-social support, mental health and palliative care for people living with rare diseases and their families;
– partnership with all interested parties (expert centers at national and international level, National Genetic Laboratory, ERN);
– creation of advocacy networks;
-opening of a national phone line for rare diseases: 080030097;
– implementation of digital innovations to provision the needs of those affected (chat bot); neuro-cognitive rehabilitation (through the Neuroforma system) and improving the quality of life of patients with rare diagnoses;
– organization of free training camps, information campaigns, international conferences, sports initiatives and voluntary activities in support of those affected.
www.huntington.bg
