HD in Bulgaria
Bulgarian Huntington Association The Bulgarian Huntington Association (BHA) was established in February 2014 BHA is a member of EURORDIS, the European Huntington Association (EHA), as well as the National Alliance of People with Rare Diseases in Bulgaria From the very start, our mission has been to create awareness for HD by any means available to us; and to provide support, in any way we can, for our Bulgarian HD families
Main problems in Bulgaria LACK OF INFORMATION Among healthcare professionals Lack of experience with recognizing HD Lack of experience in treating HD patients In affected families Wrong diagnosis Delayed diagnosis HD hot-spots in remote areas, without sufficient access to information and medical care General public unaware of HD Stigmatizes Isolates
Main problems in Bulgaria LACK OF HD TREATMENT ALGORITHM/PROTOCOLS No HD clinical trials in Bulgaria Lack of healthcare specialists with HD experience outside of Sofia No specialized centers for palliative care of HD patients After years of effort on our side, Tetrabenazine is still not reimbursed by the government for HD patients The National Healthcare Fund provides a short hospital stay for HD patients, for testing (including genetic testing), but offers no specialized care beyond that Psychiatrists still consider HD an exclusively neurological disease and refuse to treat HD patients
What we have done so far We have come in contact and provided support for more than 60 Bulgarian HD families, which we provided with: General information about the disease Communication with HD specialists, for diagnosis and/or treatment Provided information on genetic testing for HD (Free testing during 2014) Free psychological and social counseling for the families Free rehabilitation for HD patients
What we have done so far Psychosocial support for HD families - During 2015 and 2016, we secured financing for 2 projects, aimed at providing free counseling with a psychologist, a social worker and a rehabilitator for HD patients and people with rare diseases in Sofia, in the comfort of their own homes We created, translated and distributed various materials dealing with HD Organized Bulgarian HD bike tour with Jeroen DeSchepper, during 2015 We worked with the specialists at Nadezhda Women’s Health Hospital, to make PGD (Preimplantation Genetic Diagnosis) available for people affected by HD, for the first time in Bulgaria
What we have done so far During 2015, we organized charitable projections of Chris Furbee’s focumentary, Huntington’s Dance in various cinemas all over Bulgaria We organized and hosted the first ever Bulgarian HD seminar for medical professionals in May 2016, with experts from the EHDN We have attended and taken part in all conferences and events about rare diseases in Bulgaria, to help spread awareness about HD
What we are doing right now We are in the process of establishing the first ever Center for Psychosocial Support of People with Rare Diseases in Bulgaria, where we will provide: Rehabilitation, including the usage of the advanced technological neurorehabilitation solution NEUROFORMA, which has been adapted for Bulgaria Massages and remedial gymnastics Psychological counseling: Individual, family and group counseling Consultations with a social worker Consultations with a lawyer Information about all aspects of HD
BHA on local media
BHA on local media
BHA on local media
BHA on local media
BHA on local media
BHA on local media
BHA on local media
BHA on local media
BHA on local media
Thank you for your attention!