The general secretary of EURORDIS – Mrs. Christel Nourissier has been awarded the highest state award of France – National Order of the Legion of Honour. Mrs. Nourissier has been awarded the title “Knight of the National Order of the Legion of Honour” by decree of President of France Nicolas Sarkozy because of her long work in favor of people with rare diseases. ICRDOD congratulates Mrs. Nourissier and wishes her good health and many more professional successes.
The Clinical Center of Endocrinology and Gerontology organize a meeting with Prof. Annamaria Colao on initial treatment with somatostatin analogues of acromegaly as an alternative to surgical treatment. Prof. Colao is a leading endocrinologist with substantial scientific contributions in the field of medicinal treatment of acromegaly and Cushing disease. She is the director of the Clinic of Neuroendocrinology at the “Federico ІІ“ University in Naples, Italy. The meeting is supported by Novartis Pharma – Bulgaria and will take place on 16 July at “Saint Catherine” University Hospital from 11.30 a.m.
On 8 June 2009 the Council of the European Union adopted in a public debate a recommendation on an action in the field of rare diseases. This recommendation aims to provide a coordinated EU approach to ensure effective recognition, prevention, diagnosis, treatment, care and research in the field of rare diseases in Europe.
On 10 July (Friday) a meeting with Mrs. Madlen Algafari will be held in Plovdiv. The event is organized by the Association of HAE Patients, the Information centre for rare diseases and orphan drugs and the National alliance of people with rare diseases. It will start at 16h at “Sezoni” Hall (18 Krastyu Pastuhov Street, o).
The official website of the Fourth Eastern European Conference for Rare Diseases and Orphan Drugs is now available in 5 languages – Bulgarian, English, French, German and Russian. Visit www.conf2009.raredis.org regularly and stay tuned to all news and updates concerning this important scientific event.
The Scientific committee of the Fourth Eastern European Conference for Rare Diseases and Orphan Drugs is now formed. To see its members, please click here.
On May 21 (Thursday) from 18.30h. at the Hotel Expo – Sofia (149 Tsarigradsko Shosse Blvd) a charity auction of paintings in aid of children with rare diseases will be held. Pygmalion Foundation and Hebrosart Gallery are the organizers.
The Fourth Eastern European Conference on Rare Diseases and Orphan Drugs will be held on June 13-14 2009 in Plovdiv, Bulgaria. The conference will take place in the Congress centre of NOVOTEL – Plovdiv. More detailed information will be given soon.
The National Plan for Rare Diseases is already available in English. To read it, please, click here. This is an unofficial translation.