Pulmonale Hypertenie e.V.
History
Founded in 1996, PHeV is the oldest PH patient association in Europe, together with HtaPFrance, the French PH patient association, which was established in the same year.
Activities
PHeV offers its members a wide range of services, which include, inter alia, an information service, meetings for patients and family members, a bi-monthly newsletter, two editions per year of a magazine with news and detailed information, a patient forum, audiovisual materials with patient information and testimonials, a patient “passport”, personal counseling and contacts with specialized doctors.
Research
The René Baumgart Stiftung foundation was established in 2001 to support research, and each year gives out an award for the most prominent projects. PHeV is also actively involved in awareness raising and promotion of scientific research.
Annual scientific conference
The PHeV annual scientific conference consistently draws over 200 participants from all over the country, and features some of the most renowned medical professionals as speakers. The conference also provides a platform to present the PHeV annual Journalist award. In the past year the association’s meetings have been replaced by online webinars, which have been very successful in terms of participation and engagement.
Affiliations
- At national level PHeV is a member of ACHSE, Rare Diseases Germany, the alliance of and for people living with rare diseases.
- It is also a member of the German Lung Foundation and other smaller patient groupes.
- It is part of the working groups of the BAG, the German Rare Disease Organisation.
- At EU level, PHeV is member of EURORDIS, the European organization for rare diseases.
For more details see:
PheV https://www.phev.de/
René Baumgart Stiftung https://www.rene-baumgart-stiftung.de/