Founded in 1996, HTaPFrance is the longest standing PH patient association in Europe, together with phev, the German PH patient association, founded the same year.

Services and activities

HTaPFrance offers its members a very wide range of services, which include, inter alia, different forms of organizational, administrative, social, educational and emotional support for patients and caregivers. These include family weekends, regional patient meetings, national patient conferences, as well as advocacy and awareness activities aimed at improving PH care and the PH patient experience. HTaPFrance acts as a link between patients, doctors, public and political health authorities, administrations, the pharmaceutical industry, home health care providers, patient associations and other stakeholders in PH.

  • HTaPFrance is member of PulmoTension, the French Pulmonary Hypertension Network.
  • HTaPFrance is a member of the Steering Sommittee of RespiFIL, the French reference network for rare respiratory diseases.
  • HTaPFrance represents rare disease associations in the Steering Committee of the Plateforme d’expertise maladies rares, Paris-Saclay.
  • HTaPFrance sits on the Conseil National de l’Alliance maladies rares.
  • HTaPFrance is a member of AVNIR, an informal group of associations researching issues around the vaccination of immuno-depressed and other vulnerable patients.


HTaPFrance takes part in and supports medical and scientific research on PH and PH treatments. HTaPFrance sits on the Independant Ethical Committee and Scientific Board of the RHU Destination 2024, a research project led by leading PH expert Prof. Marc Humbert. The association also supports research by making annual financial donations to Unité INSERM U999.


HTaPFrance has published a number of educational materials, videos and publications whose medical contents are validated by HTaPFrance’s Scientific Advisory Board. HTaPFrance has contributed to the writing and editing of several documents including:

  • Hypertension Arterielle Pulmonaire – La prise en charge multidisciplinaire, under the direction of Prof. Gérald Simonneau, widely considered one of the top PH experts in the world.
  • L’HTAP en questions, coordinated by Dr Irène Frachon (pulmonologist)
  • The national protocol for diagnosis and care of PAH (2007 and 2019)
  • The national protocol for diagnosis and care of systemic scleroderma (2017)
  • The association also participated in the development of three certified patient educational programs for pediatric PH, adult PH, and double-lung transplantation treatments.

Worldwide activities

  • HTaPFrance is a Member of EURORDIS, the European Organization for Rare Diseases.
  • HtaPFrance volunteers regularly organise cross-border patient meetings.
  • HTaPFrance attended the PHA’s bi-annual conferences in 1996, 1998, 2000, 2002, 2004, 2006, 2008 and 2012.
  • HTaPFrance attended the World Symposium on PH (WSPH) in 2008 (Dana Point, USA) and 2013 (Nice, France).
  • In 2016, the PHA named Mélanie Gallant-Dewavrin (Past President and current Director of HTaPFrance) a “Periwinkle Pioneer” (individuals and groups responsible for advancing care for PH patients and helping to change the history of this disease).

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