Rare Diseases Registries in Bulgaria
ICRDOD has published an updated review of the epidemiological registries for rare diseases in Bulgaria, building on the previous analysis on this subject from 2012. The new report includes information on the state-of-the-art of epidemiological registries for rare diseases in Bulgaria up to August 2014. It introduces important new concepts such as the Global Rare Diseases Patient Registry and Data Repository of the Office for Rare Diseases Research at the US NIH, as well as the International Rare Diseases Research Consortium (IRDiRC). The review presents the provisions of the officially promulgated Ordinance № 16 of the Ministry of Health on the terms a ... ->>>Access to medicinal therapies for rare diseases in Bulgaria
The Centre for Health Technology Assessment and Analyses at the Institute of Rare Diseases (IRD) has published its 2014 Annual Report on access to rare disease medicinal therapies in Bulgaria. The study carries on the tradition of annual monitoring of the access to orphan drugs in Bulgaria, an IRD activity since 2010. The 2014 edition is substantially enlarged to include a budget impact analysis, as well as a review on best practices in the EU. The report concludes with six recommendations on how to improve access of Bulgarian rare disease patients to medicinal therapies. To read the full-text publication, please click here.
S.T.o.Re project gathered doctors and patients for a discussion about medical records
Two focus-groups were held on 3rd December in Plovdiv and Sofia as a part of S.T.o.Re project. They studied the attitudes among rare or chronic decease patients, doctors, nurses and health authorities about the types of information that should be included in the medical records. Participants stated many reasons in favour of complexity and chronological ordering of included information and about the need of keeping integrated medical records for every patient. If you want to share your opinion on the subject , please, fill our short online questionnaire.
For more information about the project, please, visit its website.
Institute for Rare Diseases presented outstanding contribution awards in rare disease field in Bulgaria
The Fifth National Rare Disease and Orphan Drugs Conference was held on 26-27 September 2014 in Novotel Plovdiv and coincided with 10th anniversary of Informational Centre for Rare Diseases and Orphan Drugs.
To celebrate it the Institute for Rare Diseases invited the people it successfully collaborated with during the years who contributed for the advancement and developments in rare disease field in Bulgaria. Their activity and desire for change, their professionalism and devotion helped to promote awareness and care for people with rare diseases.
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Genetic InsidER: I International Congress on Clinical Genetics and Genetic Counselling in Rare Diseases
On 16-17th April 2015 Seville, Spain will be hosting the I International Congress on Clinical Genetics and Genetic Counselling in Rare Diseases.
The conference aims to provide healthcare specialists, researchers and many other professionals involved in the treatment and diagnosis of rare diseases with the necessary tools to correctly interpret and communicate etiology and natural history to ensure the best management of the disease and the patient.
It will present an overview of individual and networking projects that are carried out in the field of RDs. The Congress will provide an opportunity to take part in the pioneering research regarding its key ... ->>>
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Merry Christmas
Institute for Rare Diseases wishes you a wonderful Christmas filled with warmth and shared happiness!
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National Association of Sarcoidosis (NAS)
Contact Person: Iliana Tonova Piryankova Phone: 0878433496 E-mail: nas_sarcoidosis_bulgaria@mail.bg, iliana_tonova@abv.bg Website: http://sarcoidosisbulgaria.alle.bg Postal address: 1404 Sofia, r. a. Gotse Delchev 246 ent.G fl.5 Governing Body: Iliana ->>>
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International patient meeting “Exchange experience”
Eurasian Alliance Rare Diseases is organizing an international patient meeting for sharing experience on 13-14 December 2014 in Sofia. It will be attended by patient ->>>
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Charity bazaar for Epidermolysis bullosa patients
Epidermolysis bullosa patient organization DEBRA Bulgaria is holding a Charity bazaar from 10 to 12 December in Ring Mall Sofia. Its goal is to raise ->>>
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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 Spectrum Disorders in Europe(ASDEU) has been funded by the European Commissionto research autism diagnosis, prevalence and interventions and to improve care and support for peoplewith autism. Autism Spectrum Disorders in Europe (ASDEU) is a three-year programme run by a consortium of 20 groups from 14 countries. ASDEU has received 2.1 million euros from the Directorate-General of Health and Consumers of theEuropean Commission (DG-SANCO) to increase understanding of and improve responses to autism. BAPES is a member of the programme consortium. The project will ->>>
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What drives the patients to choose cross border healthcare
The Executive Agency for Consumers, Health and Food (CHAFEA) of the European Commission performed a study into the impact of information on patients’ choice in ->>>
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Institute for Rare Diseases presented outstanding contribution awards in rare disease field in Bulgaria
The Fifth National Rare Disease and Orphan Drugs Conference was held on 26-27 September 2014 in Novotel Plovdiv and coincided with 10th anniversary of Informational ->>>
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Lifetime Achievement Award in the field of rare diseases
In 2014 Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) celebrates its 10th anniversary respect and honors distinguished patients, doctors, scientists, journalists and politicians ->>>
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S.T.o.Re project gathered doctors and patients for a discussion about medical records
Two focus-groups were held on 3rd December in Plovdiv and Sofia as a part of S.T.o.Re project. They studied the attitudes among rare or chronic decease patients, ->>>
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Online Survey about Best Practices on Integrated Medical Records
An online questionnaire about best practices on Integrated Medical Records (IMR) with Narrative Based Information (NBM) is under conduction within the Story Telling on Record ->>>
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The quest for diagnosis: a narrative analysis of patient journeys
When rare disease patients tell about their quest for a diagnosis, their stories resemble the ones of heroes seeking something valuable. Edmund Jessop, author of ->>>
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National Registries of Rare Diseases
The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases ->>>
