Representative pulmonary hypertension (PH)-focused patient organisations#
Organisation (website) | Region; beginning | Constituency | Mission | Major activities |
Pulmonary Hypertension Association (https://phassociation.org) | USA; 1991 | PAH and CTEPH patients, caregivers, physicians and allied health professionals, researchers; membership: >16 000 | “To extend and improve the lives of those affected by PH” | Research funding support; advocacy; patient support and education, medical education and public awareness and education; PH care centre accreditation |
Pulmonary Hypertension Association Canada (www.phacanada.ca) | Canada; 1999 as Pulmonary Hypertension Society of Canada, renamed PHA Canada in 2008 | All PH patients and their caregivers, physicians and allied healthcare professionals; engagement: >1000 (note no formal membership) | “To empower the Canadian PH community through awareness, advocacy, education, research and patient support” | Patient/caregiver support and education; advocacy; medical education; public awareness and education; research funding support |
Pulmonary Hypertension Association Japan (www.pha-japan.ne.jp) | Japan; 1999 | PAH and CTEPH patient, caregivers; membership: >200 | “Promotion of social awareness and understanding about PH” | Advocacy; patient support and education, public awareness; promoting early diagnosis and access to new drugs |
Pulmonary Hypertension Association UK (www.phauk.org) | UK; 2000 | PAH and CTEPH patients, caregivers, physicians and allied health professionals, researchers; membership: >4000 patients and >200 HCPs | To advance the education and awareness of the general public and medical professionals of the condition known as PH; the relief of need of sufferers of PH, their families and carers through the provision of financial assistance towards, but not exclusively, respite care, travel grants and equipment grants at the discretion of the executive committee, as and when resources allow | Patient and family support, high-quality online/printed support materials, support and advocacy for all patients with all forms of PH, increasing disease awareness within all areas of healthcare and general public; reduce the time to diagnosis for PH; improve the health wellbeing and quality of life of patients with PH and their kinship; ensure equity of access in the UK to evidence-based PH treatments for all; reduce the financial hardship incurred by living with PH |
Pulmonary Hypertension Association Europe (www.phaeurope.org) | Europe; 2003 | Umbrella organisation for 40 patient associations in 33 countries | “Promotion of social awareness and understanding about PH” | Improve access to expert care, improve awareness and screening, encourage clinical research and innovation, empower patient groups, ensure the availability of psychosocial support |
Latin Society of Pulmonary Hypertension (Sociedad Latina de Hipertensión Pulmonar) (www.sociedadlatinahp.org) | Latin America; 2005 | Umbrella organisation for 21 Latin American patient associations in 16 countries | “To raise awareness about PH throughout Latin America” | Promoting optimal level of care for PAH patients, availability of quality treatments, research on new drugs and therapies, awareness and public policies; umbrella organisation supporting regional patient organisations; awareness campaigns include: “Labios Azules” (“Blue Lips”) (2011); “Sin Aliento” (“Short of Breath”) (2012); “Quedate sin Aliento” (“Stay Breathless”) (2014) and “Un Aliento para Vencer” (“Breathe to Win”) (2016) |
Pulmonary Hypertension Association of Australia (www.phaaustralia.com) | Australia; 2005 | All categories of PH patients, caregivers, family and supporters, pre- and post-transplant patients; HCPs are non-participant members trying to understand the patient/family side of the disease; membership >7000 | “To provide hope, support and education, and to promote awareness and to advocate for the PH community” | Administered by volunteers for 18 years (no paid staff); patient, caregiver and family education; public awareness and education through website and several social media platforms; advocate for the PH community; bereavement support; immediate phone support for those in a PH-related crisis; immediate online support through their secure Facebook support group; work closely with Australian specialists through the Pulmonary Hypertension Society of Australia and New Zealand (www.phsanz.org) to ensure best outcome for patients |
iSEEKPH Hope Center (www.iseek.org.cn) | China; 2011 | Patients, caregivers, physicians, medical professionals, researchers; membership: >5000 | “To advocate for patients’ equal rights and improve their quality of life” | Advocacy; patient education and support; public awareness; education; research |
PAH: pulmonary arterial hypertension; CTEPH: chronic thromboembolic PH; HCP: healthcare professional. #: for a comprehensive listing of international PH associations, see https://phassociation.org/phinternational.