Mapping the main stakeholders in pulmonary hypertension care, a brief summary by Pisana Ferrari

The main stakeholders in pulmonary hypertension care, a brief summary

Author: Pisana Ferrari

Last updated August 2, 2023

The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the evolving landscape and input from the pulmonary hypertension community.

Patient associations

Links to pulmonary hypertension associations and networks feature in the map on the Home page and are categorised under Patient associations and networks in the PH-KSP archive.

Patient federations and networks

A number of pulmonary hypertension associations have joined forces and set up broader patient networks: PHA Europe, the Alliance for Pulmonary Hypertension, the Sociedad Latina de Hipertensión Pulmonar, and the Coalición de Hipertensión Pulmonar Latinoamérica.

Scientific societies

Scientific Societies are voluntary associations of specialists with an interest in a particular branch of medicine. They mark the progresses in pulmonary hypertension science and anticipate future developments advancing science. The most relevant scientific societies for pulmonary hypertension care are listed below. In past years many of these have been involving patient representatives in their work in different capacities (working groups, task forces, etc.). The most recent example is the inclusion of two pulmonary hypertension advocates in the Task Force for the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension, Pisana Ferrari, AIPI, Italy and Gergely Meszaros JD, patient advocate.

Regulatory authorities

Marketing authorisations for new treatments are released by national regulatory authorities. In the European Union there is a centralised system whereby all marketing authorisations are processed and released by a central authority, the European Medicines Agency (EMA). The Federal Drug and Food Administration (FDA) is the regulatory authority for the USA.

European Reference Networks (ERNs)

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU countries. 24 ERNs are working on a range of thematic issues, including ERN Lung, which includes a core network on pulmonary hypertension, led by Prof. Marc Humbert.

European Patient Advocacy Groups (ePAGs)

The European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs) (see above). Two pulmonary hypertension advocates are members of the ePAG for ERNLung: Luc Matthysen, HTAP Belgique, and Gergely Meszaros, patient advocate.

ePAG for ERN Lung

European Union institutions

The EU complements national health policies by supporting local EU governments to achieve common objectives, pool resources and overcome shared challenges. In addition to formulating EU-wide laws and standards for health products and services, it also provides funding for health projects across the EU. In recent years members of the European Parliament have hosted or taken part in events organised by patient associations, e.g. a Call to Action to improve organ transplant in Europe (2015), and the more recent Call to Action on Unmet Needs of Patients with Pulmonary Hypertension (2022). A dedicated MEP Lung Health Group was launched in 2020. DG SANTE at the European Commission has also supported patient-led initiatives.

European Public Health organisations

The European Patients’ Forum (EPF) is a non profit an umbrella organisation of patient organisations across Europe and across disease-areas. The European Public Health Alliance is a non profit organisation bringing together public health NGOs, patient groups, health professionals, and disease groups.

Rare disease organisations

According to the European Union definition diseases are “rare” if their prevalence is lower than 5 per 10 000 inhabitants. Some forms of pulmonary hypertension fall under this category: pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension. EURORDIS is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases. The National Organization for Rare Disorders (NORD) is the leading independent patient advocacy organisation representing all individuals and families affected by rare diseases in the United States.

Research Institutes

The Pulmonary Vascular Research Institute (PVRI) was established in 2006 as a way for fellow scientists, clinicians and academics to come together and share knowledge on pulmonary vascular disease. The Ludwig Boltzmann Institute for Lung Vascular Research aims to provide a contribution to early recognition of pulmonary vascular diseases including pulmonary hypertension via novel and non-invasive methods and to develop innovative therapeutic strategies.

Foundations

The European Lung Foundation is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.

European Lung Foundation (ELF)

Pharmaceutical industry – pulmonary hypertension

This (non-exhaustive) list includes companies that have developed or have been involved in any way in developing treatments for pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension.

NB Some of these companies are no longer active in the field but we have included them them as they are part of the “history” of pulmonary hypertension care. Some have been acquired by other companies: these are also included, for the same reason as above (e.g. Actelion by Janssen, Acceleron by MSD, Arena by Pfizer …).

This list will be updated regularly to ensure that all the companies working the field are represented and we count on the feedback from the community for this!

Pharmaceutical industry – organ transplant

This (non-exhaustive) list includes companies that have developed, or are in the process of developing, treatments for patients having undergone organ transplantation.

NB: This list is non-exhaustive will be updated regularly to ensure that all the companies working the field are represented and we count on the feedback from the pulmonary hypertension community for this!

Visuals by Giacinta Notarbartolo, Graphillus, Milan (IT)