Alliiance for Pulmonary Hypertension (AfPH)
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, with the Turkish Association PAHSSc joining as a new member in 2022. The Dutch Pulmonary Hypertension Association Stichting Pulmonale Hypertensie and 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 about pulmonary hypertension across the community and engage in collaborative activities to address unmet patient needs and 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 Code of Ethics
Every member of the Alliance for Pulmonary Hypertension (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.
AfPH Projects 2023
Pulmonary hypertension Knowledge Sharing Platform (PH-KSP)
The Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP) is a patient-led initiative to share information, resources, knowledge, skills and best practices about pulmonary hypertension across the community. It was developed by members of the AfPH), patients, family members, carers and friends, scientific experts, IT, graphic design and digital communications professionals. Read more in the dedicated section at this link
Knowledge Sharing webinars and online events
The AfPH plans to hold a series of webinars in the course of 2023, to look at different aspects of the new 2022 ESC/ERS guidelines and in particular the novelties they have introduced. For each of the webinars we will invite one or more members of the guideline Task Force as guest speakers. Our objective is to share the knowledge from the 2022 guidelines with the wider pulmonary hypertension community. Read more in the dedicated section at this link
AfPH Board Members
Ioanna Alyssandratou, President
- Background in insurance
- Professional experience as financial Advisor until diagnosis of idiopathic pulmonary hypertension in 2010
- Currently retired
- Patient advocate since 2012
- Founder, President and volunteer CEO of the Hellenic Community for Pulmonary Hypertension (Greek and Cypriot patients and caregivers) since 2013
- 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 organizations 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)