Romanian Hereditary Angioedema Network

The Romanian Hereditary Angioedema Network (RHAEN) is a nongovernmental organization. Its scopes include: coordination of the initiatives for fighting against the isolation of the HAE patients, acquisition and spreading of scientific knowledge, providing the patients with specific medications, development of quality complement laboratories, facilitation of international cooperation etc. The Romanian HAE Network's organization started in 2005 and was officially registered in 2006.

During the first four years of activity we made some progress in increasing the awareness of colleagues of different specialties: allergologists, specialists in internal medicine, pediatricians, and dermatologists. RHAEN has organized lessons, courses, seminars and workshops in different occasions, mainly at national level meetings of the professional societies.

 Our names have appeared in 36 article, presented or published in Romania and abroad. Up to date, we have confirmed the C1-INH deficiency diagnosis in 66 cases. Some of the patients participated or continue to participate in four international multicentric clinical studies on orphan drugs.

The Foundation has received international support by the visiting health professionals: Prof. Dr. Henriette Farkas, Dr. Lilian Varga and Prof. George Füst from HAE Centre, from the 3rd Medical Clinic of Semmelweis University in Budapest, Prof. Marco Cicardi from the Luigi Saccho Hospital, University of Milano, Dr. Peter Spaeth from the University of Bern, Prof. Konrad Bork from the Dermatology Clinic of the Johannes Gutenberg University in Mainz, and Prof. Timothy Craig from Pennsylvania University.

In long term, our efforts will continue to focus on raising the awarness about this rare disease among medical professionals as well as the general public and on building up an efficient nation wide network. The most pressing projects include the availability of patients to the recently registered drugs for long term prophylaxis of HAE symptoms and for the emergency treatment of HAE attacks.

Romanian Hereditary Angioedema Network in the newspapers

28th February  - Rare Disease Day (The title of the article in hungarian language Február 28. – A ritka betegségek napja). Published in Népujság on Feb. 26th 2010. (Click here)

Last update: 22.08.2010.