The Alliance for Pulmonary Hypertension (AfPH) is registered in Brussels (Belgium) as an international non-profit organisation (IVWZ) in 2020. Its current membership includes as full members the pulmonary hypertension patient associations from Belgium (HTAP Belgique and Pulmonale Hypertensie vzw), France HtaPFrance, Germany pulmonale hypertonie e.v. ermany, Greece Hellenic Community for Pulmonary Hypertension, Italy AIPI – Associazione Ipertensione Polmonare Italiana OdV, Latvia Pulmonālās hipertensijas biedrība, Netherlands Stichting Pulmonale Hypertensie Poland Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół, Turkey Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi . PHA Japan is an associate member.
Mission
The AfPH’s mission is promoting the sharing of knowledge and expertise across the pulmonary hypertension community and engaging in collaborative activities that address unmet needs and can help improve access and efficacy of pulmonary hypertension care.
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)
Louise Bouman van der Waal, Member
- Bachelor degree in Oral healthcare, University of Applied Sciences Utrecht (HU)
- Bachelor degree Marketing, NCOI University of Applied Sciences
- Have been working in sales and marketing in the Pharmaceutical and Medical industry
- Pulmonary Arterial Hypertension patient, diagnosed in 2008
- President of the Dutch Pulmonary Hypertension Association (Stichting Pulmonale Hypertensie)
- European Patients Academy on Therapeutic Innovation (EUPATI) Fellow since ’22
AfPH Scientific Commitee
The Alliance for Pulmonary Hypertension is very honoured to present its Scientific Committee, featuring some of the world’s most renowned experts in the field of pulmonary hypertension. The Scientific Committee will play a pivotal role in supporting the Alliance’s mission to share knowledge and expertise about pulmonary hypertension. Their expertise and insights will be invaluable in shaping the direction and quality of the information we disseminate, in particular in ensuring that it originates from authoritative sources and aligns with our standards of accuracy, appropriateness, and relevance. The names of the members are in alphabetical order from top left.
AfPH Financial report 2021
AfPH Financial report 2022
AfPH Financial report 2023
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.
