Institute for Rare Diseases wishes you an amazing New 2023 Year full of health, luck and shared happiness!
The focus of the new video series “Living with Rare Diseases” is Spinal Muscular Atrophy (SMA) – an inherited neuromuscular disease, affecting 1 in 11 000 newborns. There are about 160 patients diagnosed with this rare disease in Bulgaria. Thanks to the development of medicine, people with SMA in Bulgaria have access to an innovative treatment since 2019 which provides an opportunity for a better future, if started early on time. See how the lives of Alexander and Nikolinka Matsoeva, the Kunovi family and Malena Vasileva have changed 3 years after access to treatment and how the difficulties have made them stronger and more valuable people!
The new issue 2 for 2018 of our journal “Rare Diseases and Orphan Drugs” is already published. You can find it on the website of the journal.
This team of medical specialists provides the answers of the requests to ICRDOD voluntarily and unpaid.
• Dr. Dimitrina Konstantinova, MD, PhD
• Dr. Hristo Shipkov, MD, PhD (more information)
• Assoc. Prof. Iliyana Pacheva, MD, PhD
• Prof. Ivan Ivanov, MD, PhD (more information)
• Assoc. Prof. Ivelina Yordanova, MD, PhD (more information)
• Prof. Janet Grudeva-Popova, MD, PhD (more information)
• Dr. Katya Sapunarova, MD, PhD
• Assoc. Prof. Krasimira Chudomirova, MD, PhD (more information)
• Assoc. Prof. Margarita Stefanova, MD, PhD (more information)
• Prof. Mariana Murdjeva, MD, PhD (more information)
• Dr. Marieta Peycheva, MD (more information)
• Dr. Nikolay Botushanov, MD (more information)
• Dr. Pavel Balabanov, MD, PhD (more information)
• Dr. Petya Blagoeva, MD (more information)
• Dr. Radka Stoeva, MD
• Prof. Radka Tincheva, MD, PhD (more information)
• Dr. Radostina Simeonova, MD, PhD (more information)
• Assoc. Prof. Ruska Hristova, MD, PhD
• Assoc. Prof. Vasil Yablanski, MD (more information)
• Assoc. Prof. Vesela Stefanova, DD
• Assoc. Prof. Veselina Goranova-Marinova, MD, PhD (more information)
• Dr. Vyara Shumnalieva-Ivanova, MD (more information)
•Dr. Lilyana Grozdanova, MD
• Assoc. Prof. Maria Simeonova
• Dr. Ruska Shumnalieva
• Prof. Atanas Batalov
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Last modification: 12:00 26.06.2018
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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:
Mr. Victor PASKALEV
Mr. Yordan NEDEVSKI
Address:
Hipodrum Residential Complex, Bl. 120, Ent. A, Apart. 6
Sofia, 1612, BULGARIA
Mobile phone:
(+359) 2 47 83 964
Fax:
02 / 48 97 301
E-mail:
office@hemo-bg.org
Internet site:
http://hemo-bg.org
Youtube URL address:
https://www.youtube.com/channel/UCQcC_R46z7qv0Pd5Pxpx5yg
Regional Representatives:
Sofia – Mrs. Petya SAZDOVA, e-mail:sazdova.p@hemo-bg.org, Phone number: +359 889 402 432;
Plovdiv – Mrs. Mariya SOTIROVA, e-mail: sotirova.m@hemo-bg.org, Phone number: +359 899 894 479;
Varna – Mrs. Mirena MANZOVA-IVANOVA, e-mail: manzova.m@hemo-bg.org, Phone number: +359 888 116 685;
Pleven – Mr. Boyko GARGOV, e-mail: boyko.g@hemo-bg.org, Phone number: +359 883 367 111;
Governing Body:
Mr. Victor PASKALEV – Presiden
Mr. Yordan NEDEVSKI – Deputy Chairman
Mrs. Anna BESHKOVA
Mr. Nikolay TSONEV
Mrs. Emiliya ANDREEVA
Priorities of the association:
- Establish a national work plan for treatment and prophylaxis and adequate policies for the treatment of haemophilia A, hemophilia B, von Villebrand disease and other rare coagulopathies;
- Improving the diagnosis, treatment and control of the treatment of patients with haemophilia A, hemophilia B, von Villebrand disease and other rare coagulopathies;
- Increasing the patient’s capacity (knowledge and skills) about the disease;
- Raising the capacity (knowledge and skills of the disease) of parents of children suffering from haemophilia A, haemophilia B, von Villebrand disease and other rare coagulopathies;
- Building a network between physiotherapists and rehabilitators working with patients with haemophilia, von Villebrand disease and other rare coagulopathies to improve the quality of life of these patients;
- Familiarity with Haemophilia A, Haemophilia B, Von Villebrand disease and other rare coagulopathies and informing about the problems associated with them;
- Overcome and counteract discrimination and stigmatization of patients with haemophilia A, hemophilia B, von Villebrand disease and other rare coagulopathies;
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Last modification: 12:12 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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