Addresss: residence quarter Krasno selo, bl. 198, 6th floor, ap. 23, Sofia 1618
Phone: 0886 390 679
E-mail: info@huntington.bg
Facebook: https://www.facebook.com/huntington.bg/
A group of parents of children and women with Turner syndrome gathered together in a patient association to exchange experiences, ideas and mutual assistance in the fight against the disease. Turner syndrome is a chromosomal disorder associated with the complete or partial absence of an X chromosome. To support patients suffering from the disease in Bulgaria, the organization translates the book “Turner Syndrome – Know Your Body!” which is the result of the intense interest of many researchers from Europe and the US to girls and women with Turner Syndrome. You can find the book here.
Contact Person:
Ms. Slaveya KOSTADINOVA
Phone: 0887 297 122
Antoaneta Ivanova
Phone:
0898 756 838
E-mail
info@sbhb.org
Website
http://www.sbhb.org/
Address:
110, Mir str., Varna, Bulgaria
Governing Body
Ms. Slaveya KOSTADINOVA – President and mother of a child with spina bifida and hydrocephalus
Ms. Victorya Nedyalkova – Member of Governing Body
Ms. Antoaneta Ivanova – Member of Governing Body and mother of a child with hydrocephalus
About the association
Spina Bifida and Hydrocephalus Bulgaria (SBHB) is an association formed by parents of children with spina bifida and hydrocephalus. SBHB is a natural, modern and adequate way to meet the growing needs of the patient community in terms of support and assistance, access to information, exchange of experience and ideas, protection of common interests before state institutions. Other priorities of SBHB include primary prevention of spina bifida and hydrocephaly, integration and improvement of quality of life of patients.
Since March 2012 SBHB is a member of the International Federation for Spina Bifida and Hydrocephalus.
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Last modification: 11:22 28.06.2018
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Contact person:
Mr. Martin KOJINKOV – President
Postal adres: Druzhba 2 Residential Area, bl. 212, entr. C, fl. 66
1582 Sofia, BULGARIA
Phone: (+359) 898 449 180
E-mail: info@babkuk.org
Internet site: http://www.babkuk.org/
Governing body: Mr. Martin KOJINKOV, President
Mr. Dimo Gatev – Member of Governing Body
Mr. Lyubomir Ivanov – Member of Governing Body
Ms. Zlatina Georgieva – Member of Governing Body
Mr. Iordan Grigorov – Member of Governing Body
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Last modification: 10:36 18.06.2018
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Contact Person:
MrS. Radoslava TOMOVA – President
Postal Address:
59-63 Dragan Tsankov Str.
1000 Sofia
Bulagaria
Phone number:
(+359) 888 323 748
Fax:
(+359) 2 790 550
E-mail:
radoslava.tomova@gmail.com
Internet site:
www.gaucher-bg.org
Board of Managers:
Mrs. Radoslava TOMOVA – President
Mr. Kristian DIMITROV
Mr. Yanko VASILEV
Purposes
National Association Of Gaucher Disease is a non-governmental organisation with non-economic purpose.
Its main purposes are:
• collecting funds for treatment and supporting of people of lizozome diseases with effect of accumulation (Gaucher disease)
• establishing contacts with similar organisations in the country and abroad
• cooperating for the respect of the human rights of Gaucher Disease patients
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Last modification: 13:05 15.06.2018
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Contact person:
Mrs. Nevena DIMITROVA
Phone:
(+359) 882 919 167
Е-mail:
contact@debra.net
Internet site:
www.debrabg.net
Governing Body:
Mrs. Nevena DIMITROVA – President
Description:
DEBRA Bulgaria is a non-governmental organisation uniting Epidermolysis Bullosa patients, their relatives and supporters, medical specialists. The association aims:
• to assure the fundamental rights of EB patients – access to adequate and quality healthcare
• to help their social integration
• to provide information about EB
• to support patients with EB and their families
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Last modification: 12:57 15.06.2018
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Contact Person:
Mrs. Dilyana Koleva – Saraivanova
Mrs. Lyusy Atanasova
Address:
4 Sheinovo Street, Ent. B, Fl. 1
Sredets Residential Complex, Sofia, BULGARIA
Mobile phone:
(+359) 889 212 676
E-mail:
diliana.saraivanova@gmail.com
lyusy.atanasova@abv.bg
Internet site:
It is about to be created
Facebook group:
It is about to be created
Governing Body:
Mrs. Dilyana KOLEVA – SARAIVANOVA – President
Mrs. Lyusy ATANASOVA
Mr. Vitomir SARAIVANOV
Activities:
- Establish contacts with similar organizations in the country and abroad
- Establishment of contacts and permanent dialogue between the Association and the governing bodies and institutions in the Republic of Bulgaria related to this disease / Ministry of Health, Ministry of Labor and Social Policy, National Health Insurance Fund, Drug Agency, National Labor Expert Medical Commission, etc. /
- Undertaking measures to overcome the emotional consequences of the disease, professional retraining and social rehabilitation of people suffering from Williams-Boiren Syndrome
- Provide funds for the treatment and support of patients suffering from Williams-Boiren Syndrome in Bulgaria and abroad.
- Means to help and assist in communicating between people suffering from Williams-Boiren Syndrome and state institutions
- Understanding the public with the problems of people suffering from Williams-Boyer syndrome, supporting social rehabilitation and professional orientation of people suffering from Williams-Boiren Syndrome
- Organizes and supports the realization of research projects in the field of treatment of Williams-Boyer’s Syndrome
- Organizes and supports the training in the country and abroad of specialists in the study and treatment of Williams-Boirens Syndrome
- Assist the specialized state and medical authorities and organizations for the establishment and operation of laboratories, offices and centers for treatment and research of the disease
- Organizes scientific meetings, symposia, congresses, conferences, sponsors publishing activities in the field of diagnosis, treatment and rehabilitation of Williams-Boyer Syndrome
- Creates international contacts for collaborative developments, for the work and specialization of Bulgarian scholars abroad for the treatment of patients suffering from Williams-Boiren Syndrome
- Provides support to research, educational and other institutions whose activities are related to the association
It opens permanent and temporary information centers in the country and abroad and other analogous structures in accordance with the Bulgarian legislation and the host country legislation - He maintains contacts and cooperates with specialized information centers on rare diseases in connection with the exchange of information on people suffering from Williams-Boyer’s Syndrome
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Last modification: 14:36 14.06.2018
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Contact Person:
Mrs. Desislava HRISTAKEVA – President
Postal Address:
47 Vladislav Ochkov Street
8800 Sliven
Bulgaria
Mobile Phone:
(+359) 898 688 767
E-mail:
dessy_pavel@mail.bg
Description:
The association was created in June 2007. Its members are patients from all ages, their relatives. It is a member of the National Alliance of People with Rare Diseases. The association is lobbying for the adequate medical treatment of the mucopolysaccharidosis patients and the respect of their rights.
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Last modification: 13:58 12.06.2018
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Contact Person:
Mrs. Polina Milusheva-Mandadzhieva
Postal Address:
National Association of Patients with Growth Hormone Deficiency
Izgrev Residential Complex, block 15 A, entr. 2
8000 Burgas
BULGARIA
Hadzhi Dimitar Residential Complex, Bl. 112, Ent. B, Fl. 7, Ap. 44
Poduene, 1510, Sofia,
BULGARIA
Mobile Phone:
(+359) 887 999 928
(+359) 878 317 298
E-mail:
pmilusheva@abv.bg
Website:
https://i.alle.bg/
Governing Body:
Mrs. Polina MILUSHEVA-MANDADZHIEVA – President
Mrs. Svetla IVANOVA
Mrs. Petya GOSPODINOVA
More about the association:
The work of the association is aimed at supporting the prevention, early detection, diagnosis and treatment of Pituitary Anesthesia and other similar diseases associated with growth hormone disorders as well as disease-related complications, supporting the social rehabilitation of patients suffering from this disease , enhancing the health culture of the population, raising the qualification of medical staff and promoting the novelties in medicine, maintaining information websites, undertaking the actions to protect the rights of patients and any other activity.
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Last modification: 13:45 12.06.2018
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Contact person:
Elena Tsoneva
Address:
Lyulin Center Residential Complex
31 Arh. Georgi Nenov Street
1324 Sofia,
BULGARIA
Phone:
(+359) 878 554 225
E-mail:
office@aniridiabg.eu
Website:
www.aniridiabg.eu
Governing Body:
Mrs. Elena TSONEVA – President
Mrs. Iva PETROVA
Mrs. Gergana KOSTADINOVA
Mrs. Tanya BALABANOVA
Mrs. Bilyana RUSEVA
Mrs. Yordanka NIKOLOVA
Mr. Ognyan PETKOV
Aims of the Association:
• Protect the rights of people with aniridia
• To support the reunification, promotion and information of people with anaridia and their adaptation to society
• To support the professional development and qualification of researchers and medics in the field of diagnosis, treatment and rehabilitation of anaridia
• To familiarize the public with the specifics of the disease, diagnosis, treatment and rehabilitation of anaridia, as well as its physiological and psychological consequences
• Encourage and support the development of research in Bulgaria and abroad
• To establish contacts with similar organizations in the country and abroad
• To establish contacts and permanent dialogue between the Association and the governing bodies and institutions in the Republic of Bulgaria related to this disease / Ministry of Health, Ministry of Labor and Social Policy, National Health Insurance Fund, Drug Agency, National Labor Expert Medical Commission and others./
• Take measures to overcome the emotional consequences of the disease, as well as professional re-training and social rehabilitation of people with anariria
• To provide means for treatment and support of patients with anaridia in Bulgaria and abroad
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Last modification: 13:29 12.06.2018
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