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., 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 mission of the AfPH is to empower the patient community with the knowledge and resources necessary to lead fulfilling lives. When patients are well-informed, they can effectively manage their condition, advocate for their rights, and engage in meaningful dialogue with healthcare professionals to make informed decisions about their care. In today’s rapidly evolving healthcare landscape, where telemedicine is becoming increasingly prevalent and patients typically see their healthcare providers only three or four times a year, the ability to self-manage and navigate day-to-day challenges during the months in between visits is more important than ever. Research consistently demonstrates that empowered patients achieve better health outcomes at lower healthcare costs.
To fulfill this mission, the AfPH created the PH knowledge sharing platform in 2023 as a comprehensive digital hub designed to connect patients, caregivers, healthcare professionals, and advocacy organizations worldwide. By facilitating direct access to expert resources and peer experiences, the platform aims to transforms how the pulmonary hypertension community shares vital information and supports one another.
The platform features a centralised library (http://ph-ksp.com) containing over 800 expert-curated resources, in various formats and languages, a section with the latest News , with an average of 15-20 entries per month, a calendar of the main scientific Events, and sections dedicated to our two key educational programs, our comprehensive live Webinars and the peer to peer support “pep talks” video series: https://ph-ksp.com/patients-empowering-patients-pep-a-new-educational-program/
At the heart of the AfPH’s educational project lies a profound belief in the transformative power of collective experience. By pooling our resources, sharing information, exchanging knowledge, and showcasing best practices, we can unlock tremendous value for the entire community.
Governance
The AfPH is a patient-led, volunteer-driven organization governed by a Board of three members, representing the national PH associations of Greece, Belgium, 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 PH field, and plan future initiatives. With no paid staff or office, the AfPH operates with minimal overhead costs, allowing all funding to be dedicated directly to projects. Additionally, the AfPH 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 AfPH has succeeded in establishing itself as an authoritative and reliable partner for collaboration with the main stakeholders in the field of PH:
Scientific Societies and HCPs
- The World Symposium for PH (WSPH) asked for AfPH endorsement and the AfPH was represented in Task Force 1 on “Patient Perspectives”.
- The AfPH 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 AfPH 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 AfPH’s Scientific Committee includes some of the leading experts in PH in the world.
Foundations
- The AfPH is a member of the European Lung Foundation (ELF) Patient Organisation Network.
- The AfPH is represented in the European Lung Foundation (ELF) PH Patient Advocacy Group (PAG).
- The AfPH is represented on the European Reference Network for Rare Lung Diseases (ERN-Lung) Patient Advocacy Group (PAG).
Public Health NGOs
- The AfPH is a member of GAAPP, the Global Allergies and Airways Diseases Patient Platform.
- The AfPH is an Associate Member of the European Patient Forum (EPF),
Research Institutes
- The AfPH has collaborated with the UK Pulmonary Vascular Research Institute (PVRI) for the PH Global Patient Survey.
- It is represented in the PVRI Patient Engagement and Lung Transplantation working groups.
PH Patient associations/networks
- The AfPH regularly publishes updates from PH associations worldwide on the PH-KSP and its social media channels, giving visibility for their initiatives and amplifying the collective voice of the PH patient community.
- Patient leaders from PH associations worldwide have been invited to speak at AfPH webinars, highlighting diverse voices and insights.
- AfPH representatives serve on several scientific society working groups, collaborating with other PH associations to advance shared goals
Healthcare industry
- The AfPH has established successful collaborations with several pharmaceutical companies active in the PH field who support its educational activities: AOP Health, Ferrer, Gossamer Bio, Janssen, Liquidia, MSD, Therakos, United Therapeutics,
- The AfPH was awarded the Horizon Therapeutics #RAREis Global Advocate Grant 2023 for innovative projects in the field of rare diseases.
- The AfPH was awarded the Amgen #RAREis Global Advocate Grant 2024 for innovative projects in the field of rare diseases.
AfPH educational activities
Pulmonary hypertension Knowledge Sharing Platform (PH-KSP)
Knowledge Sharing webinars and online events
AfPH Board
Ioanna Alysandratou, 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)
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 ’22
AfPH Scientific Committee
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 Financial report 2024
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.
