Submission of proposals and request to the Commission on Rare Diseases
The Commission on Rare Diseases at the Ministry of Health adopted an official proposal form for inclusion of diseases into the Bulgaria’s List of Rare Diseases, as well as an official request form for designation of an expert centre for rare diseases.
The Commission on Rare Diseases was established by the Minister of Health in implementation of Ministerial Ordinance № 16 of July 30, 2014 on the terms and conditions for registration of rare diseases and designation of centres of expertise and reference networks for rare diseases. The Commission prepares opinions to ... ->>>Training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA
The Institute for Rare Diseases and the Faculty of Public Health at the Medical University of Plovdiv are organising a health technology assessment workshop, which will be held on 4-5 November 2016 in Grand Hotel Plovdiv. The previous workshops have received a very positive feedback. It will be a two-day interactive event in English language, featuring speakers like Dr. Josie Goldfrey (United Kingdom), Dr. Edmun Jessop (United Kingdom) and Prof. Rumen Stefanov (Bulgaria). For further information and registration, please contact info@raredis.org.
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Patient support groups in the management of Wilson disease
The journal Handbook of Clinical Neurology has published an article about patient support groups in the management of Wilson disease. Patient support groups serve an ->>>
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(BG) Синдром на Волф-Хиршхорн
Sorry, this entry is only available in BG.
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Training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA
Between the 4-5th of November 2016, in Plovdiv was held training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA. ->>>
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Training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA
The Institute for Rare Diseases and the Faculty of Public Health at the Medical University of Plovdiv are organising a health technology assessment workshop, which ->>>
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Fabry disease
The journal European Journal of human Genetics has published an article about Fabry disease. Fabry disease, an X-linked inherited lysosomal storage disorder, is caused by ->>>
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Mucopolysaccharidoses
The journal Molecular genetics and metabolism has published an article about mucopolysaccharidoses. Sensitive, reliable measurement instruments are critical for the evaluation of disease progression and ->>>
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Training workshop on health technology assessment (part IV) – transferability and global cooperation in HTA
The Institute for Rare Diseases and the Faculty of Public Health at the Medical University of Plovdiv are organising a health technology assessment workshop, which ->>>
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International joint recommendations to address specific needs of undiagnosed rare disease patients
EURORDIS-Rare Diseases Europe, together with SWAN UK, the Wilhelm Foundation, Rare Voices Australia (RVA), the Canadian Organization for Rare Disorders (CORD), the Advocacy Service for ->>>
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New project for psychosocial help for people with rare diseases is starting
Life with a rare disease brings lots of unknown and unexpected – long search for a diagnosis, more difficult access to treatment if there is ->>>
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Autism Spectrum Disorders in Europe project is starting
Understanding about autism will get a boost as universities, charities and expert institutions from 14 European countries come together in a major new programme. Autism ->>>
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Rare diseases in Bulgaria
The journal Rare Diseases and Orphan Drugs has published an article about the rare diseases in Bulgaria. Defining and setting a rare disease inventory is ->>>
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Narrative medicine in Bulgaria
Rare Diseases and Orphan Drugs Journal has recently published the results from a research on the attitudes of doctors and patients on the application of ->>>