1. HD in Bulgaria

2. 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

3. 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

4. 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

5. 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

6. 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
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

7. 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

8. 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

9. BHA on local media

10. BHA on local media

11. BHA on local media

12. BHA on local media

13. BHA on local media

14. BHA on local media

15. BHA on local media

16. BHA on local media

17. BHA on local media

18. Thank you for your attention!