Useful Links and Tools for PAH Patients

Useful links and tools

For anyone living with a rare, chronic condition, having access to practical support and resources can be extremely valuable.

For those living with pulmonary arterial hypertension (PAH) it is important to know there are a range of support options available, whether it be family, friends, other people living with PAH (peer support), patient organisations or of course, your healthcare team.

Here is a list of useful links to patient associations and additional patient support websites.

PHA Europe (The European Pulmonary Hypertension Association)

An umbrella patient association made up of national PH associations from across Europe. On this site, you will find information about PH, new research, current events, projects, activities and additional resources about living well with PH. It also includes a directory of European patient associations to enable you to find your local patient association and peer support networks.

Link to https://www.phaeurope.org

PAH Patient Charter

The PAH Patient Charter

The PAH Patient Charter sets out the standards people living with PAH should reasonably expect from their care. The PAH Patient Charter is based on the European Society of Cardiology/European Respiratory Society (ESC/ERS) international guidelines and was developed by Janssen in collaboration with a multidisciplinary group of PAH specialists and PAH patient group representatives.

Alliance for Pulmonary Hypertension (AfPH)

The Alliance for Pulmonary Hypertension (AfPH) is an international non-profit organisation established in 2020. The AfPH’s mission is to promote the sharing of knowledge and expertise across the PH community and engage in collaborative activities that address unmet needs and can help improve access and efficacy of PH care. The AfPH “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) is an open, inclusive, collaborative space where members of the PH community can find and share information about pulmonary hypertension. It features a collection of resources in a variety of formats and languages curated by expert volunteers, as well as the latest news and events of interest to the PH community. There’s also a webinar series designed to empower people living with PH and their families, by providing actionable insights and practical knowledge.

Find out more about AfPH here: https://www.allianceforpulmonaryhypertension.com

Click here to explore the AfPH Knowledge-Sharing platform: https://ph-ksp.com

Watch episodes from the AfPH webinar series here: https://ph-ksp.com/our-webinars/

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