Alliiance for Pulmonary Hypertension (AfPH)
The Alliance for Pulmonary Hypertension (AfPH) is registered in Brussels (Belgium) as an international non-profit organisation (IVWZ) in 2020. Its mission is to empower patients through comprehensive knowledge-sharing, ensuring that evidence-based information and real-world insights are accessible to all members of the community. Through our centralized repository of 800+ resources, consistently updated news portal, live educational webinars featuring leading world experts, and targeted educational programs, we provide patients and families with the resources and understanding needed to make informed decisions about their care, engage meaningfully with their healthcare teams, and lead fulfilling lives while staying current with the latest advances in research and treatment options.
The Alliance for Pulmonary Hypertension’s 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.), 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), and Turkey (Pulmoner Hipertansiyon ve Skleroderma Hasta Dernegi). PHA Japan is an associate member.
Governance
The Alliance for Pulmonary Hypertension is a patient-led, volunteer-driven organization governed by a Board of five members, representing the national pulmonary hypertension associations of Belgium, France, Greece, Italy, and the Netherlands. Weekly or bi-weekly meetings, held on Thursday mornings, and open to all members provide a platform to report on activities, discuss developments in the pulmonary hypertension field, and plan future initiatives. With no paid staff or office, the Alliance for Pulmonary Hypertension operates with minimal overhead costs, allowing virtually all funding to be dedicated directly to projects. Additionally, the Alliance for Pulmonary Hypertension fully complies with European GDPR regulations, including the appointment of a Data Protection Officer (DPO) to ensure the highest standards of data privacy and security.
Collaborations
In its first year and a half of activity the Alliance for Pulmonary Hypertension has succeeded in establishing itself as an authoritative and reliable partner for collaboration with the main stakeholders in the field of pulmonary hypertension:
Scientific Societies and HCPs
- The World Symposium for PH (WSPH) asked for Alliance for Pulmonary Hypertension endorsement and the Alliance for Pulmonary Hypertension was represented in Task Force 1 on “Patient Perspectives”.
- The Alliance for Pulmonary Hypertension is represented at key scientific events, e.g. European Respiratory Society (ERS), European Society of Cardiology (ESC), European Society for Organ Transplant (ESOT), Transplantation Society (TTS), as speakers, panelists, or moderators.
- The Alliance for Pulmonary Hypertension is a member of the European Transplant Patient Organizations Network (ETPO), an entity created under the aegis of the European Society for Organ Transplant (ESOT).
- The Alliance for Pulmonary Hypertension’s Scientific Committee includes some of the leading experts in pulmonary hypertension in the world (link).
Foundations
- The Alliance for Pulmonary Hypertension is a member of the European Lung Foundation (ELF) Patient Organisation Network.
- The Alliance for Pulmonary Hypertension is represented in the European Lung Foundation (ELF) PH Patient Advocacy Group (PAG).
- The Alliance for Pulmonary Hypertension is represented on the European Reference Network for Rare Lung Diseases (ERN-Lung) Patient Advocacy Group (PAG).
Public Health NGOs
- The Alliance for Pulmonary Hypertension is a member of GAAPP, the Global Allergies and Airways Diseases Patient Platform.
- The Alliance for Pulmonary Hypertension is an Associate Member of the European Patient Forum (EPF)
Research Institutes
- The Alliance for Pulmonary Hypertension has collaborated with the UK Pulmonary Vascular Research Institute (PVRI) for the Pulmonary Hypertension Global Patient Survey (PH GPS). It is represented in the PVRI Patient Engagement and Lung Transplantation workstreams.
PH Patient associations/networks
- The Alliance for Pulmonary Hypertension regularly publishes updates from pulmonary hypertension associations worldwide on the Pulmonary Hypertension Knowledge Sharing Platform and its social media channels, giving visibility for their initiatives and amplifying the collective voice of the pulmonary hypertension patient community.
- Patient leaders from pulmonary hypertension associations worldwide have been invited to speak at Alliance for Pulmonary Hypertension webinars, highlighting diverse voices and insights.
- Alliance for Pulmonary Hypertension representatives serve on several scientific society working groups, collaborating with other pulmonary hypertension associations to advance shared goals
Healthcare industry
- The Alliance for Pulmonary Hypertension has established successful collaborations with several pharmaceutical companies active in the PH field.
- The Alliance for Pulmonary Hypertension was awarded the Horizon Therapeutics #RAREis Global Advocate Grant 2023 for innovative projects in the field of rare diseases.
- The Alliance for Pulmonary Hypertension was awarded the Amgen #RAREis Global Advocate Grant 2024 for innovative projects in the field of rare diseases.
Pulmonary hypertension Knowledge Sharing Platform
The Pulmonary Hypertension Knowledge Sharing Platform is a patient-led initiative to share information, resources, knowledge, skills and best practices about pulmonary hypertension across the community. Read more in the dedicated section at this link
AfPH Code of Ethics
Every member of the Alliance for Pulmonary Hypertension 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 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)
Luc Matthysen, Treasurer and 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 2022
Pisana Ferrari, Member and Secretary General
- Background in Political Science and International Relations, Université Libre de Bruxelles, Belgium
- Professional experience in Communications and Event Management
- Diagnosed with Pulmonary Arterial Hypertension in 1988
- Double lung transplant recipient in 2002
- Patient advocate for pulmonary hypertension and organ donation/transplant since 2001
- Co-Founder and President of the Italian Pulmonary Hypertension Association AIPI in 2001
Laure Rosé, Member
- Degree in Education Sciences
- Retired teacher
- Former Vice-President of HTaPFrance
- Former President of HTaPFrance (2016-2020)
- Founding member of two European associations
- Pulmonary arterial hypertension diagnosed in 1998
- Double lung transplant in 2021