International Conference “Rare Diseases: Europe’s Challenges” will take place on 31st of October 2014 in Rome, Italy. The event is organized by the Italian National Center for Rare Diseases, under the auspices of the Chamber of Deputies, within the framework of the Italian Presidency of the Council of the European Union. The aim of this meeting is to share good practices, identify synergies and concrete modalities for national collaboration and transnational cooperation in order to face and overcome the many challenges posed by rare diseases. For more information or registration, please visit the webpage of the Italian National Centre for Rare Diseases.
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 (S.T.o.Re) project. The survey is aimed at everyone who has experience of IMRs with NBM information – doctors, nurses, health authorities, patients. For more information or for completing the questionnaire, please visit the official S.T.o.Re project website.
On October 22nd will be celebrated the European Day of Organ Donation and Transplantation. It was first organized in 1996 by prof. Philippe Morel, who works at the University Hospital in Geneva. In Bulgaria, this day is celebrated for the second year. On this occasion from 11th to October 19th the National Agency of transplantation and 20 patient and medical organizations organize events across the country to raise awareness on organ donation and transplants, saving hundreds human lives and to express gratitude to the relatives of the donors.
Public discussion “My life, your life, our life” to promote the organ donation will be held on October 12, 2014 in Varna. At the meeting is invited Mariana Simeonova MD – Head of the Executive Agency transplantations, councilors in Varna Municipality in Health Sector, transplant patients and those who will be transplanted soon, citizens of the city. For more information, please visit the website of NAPRD.
NIH funds research consortia to study more than 200 rare diseases. Physician scientists at 22 consortia will collaborate with representatives of 98 patient advocacy groups to advance clinical research and investigate new treatments for patients with rare diseases. The collaborations are made possible through awards by the National Institutes of Health — totaling about $29 million in fiscal year 2014 funding — to expand the Rare Diseases Clinical Research Network (RDCRN), which is led by NIH’s National Center for Advancing Translational Sciences (NCATS). For more information, please visit the website of NIH.
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 Tonova Piryankova – Chairman
Asya Zareva – Deputy Chairman of the Board mob. Tel: 0887694653
Tsvetanka Ilieva Chukova – board member mob. Tel: 0886 978114
In 2019 will be celebrated the 20 year anniversary of the adoption of the EU Regulation on Orphan Medicinal Products and the 10 year anniversary of the Commission Communication and Council Recommendation on rare diseases. It would be a very important year for the society of rare diseases patients and everyone, involved in this mission. The European Year will send a strong public and political message on behalf of the 30 million Europeans who suffer from a rare disease and will raise awareness and encourage researchers to focus on these rare, mostly unknown, seriously debilitating and often life-threatening diseases. For more information, please visit the website of EURORDIS.
SYNONIMS: MFS
ICD10 code: Q87.4
ORPHANET number: ORPHA558
For more information about this disease, please visit the Orphanet website.
Visitors from North America may also contact NIH Office of Rare Diseases Research website.
RARE DISEASES LIBRARY:
You can subscribe for our free e-newsletter by entering your e-mail here.
DISEASE NAME: Axenfeld-Rieger syndrome
SYNONIMS: –
ICD10 code: Q13.8
ORPHANET number: ORPHA782
For more information about this disease, please visit the Orphanet website.
Visitors from North America may also contact NIH Office of Rare Diseases Research website.
You can subscribe for our free e-newsletter by entering your e-mail here.
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Last modification: 18:14 28.08.2010
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SYNONIMS: –
ICD10 code: Q85.1
ORPHANET number: ORPHA805
For more information about this disease, please visit the Orphanet website.
Visitors from North America may also contact NIH Office of Rare Diseases Research website.
RARE DISEASES LIBRARY:
You can subscribe for our free e-newsletter by entering your e-mail here.
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Last modification: 20:08 28.08.2010
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