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.
Since its foundation, the network 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 more than 50 article, presented or published in Romania and abroad. Up to date, we have confirmed the C1-INH deficiency diagnosis in 92 cases. Some of the patients participated or continue to participate in 15 international multicentric clinical studies on orphan drugs.
The Foundation has received international support by the visiting health professionals: Prof. Dr. Henriette Farkas (Budapest, Hungary), Dr. Lilian Varga (Budapest, Hungary), Prof. Marco Cicardi (Milano), Dr. Peter Spaeth (Bern, Switzerland), Prof. Konrad Bork (Mainz, Germany), prof. dr. Anasthasios Germenis (Larisa, Greece), Dr. Avner Reshef (Tel-Hashomer, Israel), prof. do. Timothy Craig (Hershey, PA, USA), Prof. Dr. Jonathan A. Bernstein (Cincinnati, USA), prof. dr. Bruce Zuraw and Sandra Christiansen (San Diego, USA).
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.
The aim of www.haenet.ro website is to inform patients and specialists on practical and scientific aspects of hereditary angioedema. Medical information presented on the site are written by specialists from the RHAEN and does not replace clinical consultation.
Last update: 11.05.2016.