Life with a rare disease brings lots of unknown and unexpected – long search for a diagnosis, more difficult access to treatment if there is any, lack of enough understanding of the condition by the medical experts and society, need to adapt to a totally different way of living, full with physical, financial and other restrictions. All of this is a heavy burden upon the psyche of the patients and their families and often leaves them confused and helpless how to cope with all the problems.
Striving to provide them with free psychological and social support, Bulgarian Huntington Association and National Alliance of People with Rare Diseases start the project “Psychosocial help at home for people with rare diseases” financed by “Social protection” Fund to Ministry of work and social politics.
From May to November 2015 psychologists and social workers will consult patients, living in Sofia in their homes.
To benefit from the social services of the project is needed a preliminary enrollment at:
info@huntington.bg, 0886 390679 – Bulgarian Huntington Association
or
tomov@raredis.org , 0888 323748 – National Alliance of People with Rare Diseases