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

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 2015 European Society of Cardiology/European Respiratory Society (ESC/ERS) international guidelines and was developed by J&J in collaboration with a multidisciplinary group of PAH specialists and PAH patient group representatives.

Since its development, new guidelines on the diagnosis and treatment of PH were released by ESC/ERS in 2022 and can be accessed here.

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/

References

[1]

NHS. Treatment: chronic lymphocytic leukaemia. Available at: https://www.nhs.uk/conditions/chronic-lymphocytic-leukaemia/treatment/. Last accessed: February 2025.

[2]

Leukemia and Lymphoma Society. Anxiety and Depression. Available at: https://www.lls.org/treatment/managing-side-effects/anxiety-and-depression. Last accessed: February 2025.

[3]

World Health Organization: Europe. Food Based Dietary Guidelines in the WHO European Region. Available at: https://iris.who.int/handle/10665/107490. Last accessed: February 2025.

[4]

World Health Organization: Europe. Alcohol in the European Union: Consumption, harm and policy approaches. Available at: https://iris.who.int/handle/10665/107301 Last accessed: February 2025.

[5]

NHS. The risks of drinking too much. Available at: https://www.nhs.uk/live-well/alcohol-support/the-risks-of-drinking-too-much/ Last accessed: February 2025.

[6]

NHS. Tips for a lower salt diet. Available at: https://www.nhs.uk/live-well/eat-well/tips-for-a-lower-salt-diet/ Last accessed: February 2025.

[7]

American Cancer Society. Physical activity and the person with cancer. Available at: https://www.cancer.org/treatment/survivorship-during-and-after-treatment/be-healthy-after-treatment/physical-activity-and-the-cancer-patient.html Last accessed: February 2025.

Get In Touch