The Alliance for Pulmonary Hypertension (AfPH) is registered in Brussels (Belgium) as an international non-profit organisation (IVWZ). It was established in 2020 by a group of pulmonary hypertension patient associations from Belgium (HTAP Belgique and Pulmonale Hypertensie vzw), France, Germany, Greece, Latvia and Poland. The Turkish pulmonary hypertension association, PAHSSc, was accepted as a new Member of the AfPH at the 2022 Annual General Assembly. The Dutch Pulmonary Hypertension Association, Stichting Pulmonale Hypertensie, and the Italian Pulmonary Hypertension Association, AIPI – Associazione Ipertensione Polmonare Italiana OdV, were accepted as full members at the Annual General Assembly on June 15, 2023. PHA Japan‘s application for associate membership was also accepted on that date.
Mission
The AfPH’s mission is to promote the sharing of knowledge and expertise across the pulmonary hypertension community and engage in collaborative activities that address unmet needs and can help improve access and efficacy of pulmonary hypertension care. The AfPH’s logo features a dandelion whose seeds are blowing in the wind, symbolising the process of seeding and cross-fertilisation of knowledge.
AfPH Projects 2023
Pulmonary hypertension Knowledge Sharing Platform (PH-KSP)
Knowledge Sharing webinars and online events
AfPH Board
Ioanna Alyssandratou, President
- Background in insurance
- Professional experience as financial Advisor until diagnosis of idiopathic pulmonary hypertension in 2010
- Currently retired
- Founder, President and volunteer CEO of the Hellenic Community for Pulmonary Hypertension (Greek and Cypriot patients and caregivers) since 2013
- Author of the rare purple elephant Pongo as Ambassador for pulmonary hypertension
- Founding Member of the Alliance for Pulmonary Hypertension (AFPH)
Hans-Dieter Kulla, Treasurer
- Background in Economics
- Professional experience in marketing in the mail order business
- Currently retired
- Volunteer for different non profit organisations including in the sports field since 1982
- President of PH e V, German pulmonary hypertension association, since 2012
- Founding Member of the Alliance for Pulmonary Hypertension (AFPH)
Luc Matthysen, Secretary
- Professional experience as Engineer (construction in Middle-East countries and Medical PVC) with Solvay.
- Luc was married to Rosie, a pulmonary hypertension patient diagnosed in 2000. Rosie sadly passed away in May 2012. They have two married boys, Ben and Lionel, and four beautiful grand-children
- Luc and Rosie founded the French-speaking pulmonary hypertension association HTAP Belgique asbl (Wallonia, Brussels), and German speaking part of Belgium, of which Luc is the current President
- Member of the Drug Information Transparency and Access DITA) task force of the European Rare Disease Organisation, EURORDIS
- Member of the ePAG (European Patient Advocacy Group) for the ERN-Lung, (European Reference Network for Rare Lung Diseases)
- Fellow of the European Patients’ Academy on Therapeutic Innovation (EUPATI).
- Founding Member of the Alliance for Pulmonary Hypertension (AFPH)
AfPH Financial report 2021
AfPH Financial report 2022
AfPH Code of Ethics
Every member of the AfPH adheres to the fundamental principles and values outlined in its Code of Ethics. This code serves as the guiding framework for the organization’s activities, shaping the context in which it operates and influencing its daily conduct and practices.
