Patient Advocacy and Support Organisations
Psoriasis advocacy organisations provide information, emotional support, research funding, and political advocacy. This section lists the most established ones and what they offer.
International
International Federation of Psoriasis Associations (IFPA) is the global umbrella organisation representing national psoriasis associations from over 50 countries. IFPA was instrumental in securing the 2014 World Health Assembly Resolution on Psoriasis and the subsequent WHO Global Report on Psoriasis (2016). It coordinates World Psoriasis Day (29 October) annually and advocates for psoriasis recognition as a serious non-communicable disease at the global policy level. Website: ifpa-pso.com
EUROPSO (European Federation of Psoriasis Associations) represents psoriasis patient organisations across Europe, working with European institutions to improve treatment access and health policy for psoriasis patients in EU member states.
United States
National Psoriasis Foundation (NPF) is the largest psoriasis patient advocacy organisation in the world. Founded in 1967, the NPF funds research, provides patient education, runs a patient navigation centre, publishes treatment guidelines jointly with the American Academy of Dermatology (AAD-NPF guidelines), and maintains a comprehensive online resource library. The NPF also publishes annual reports on the state of psoriasis care and supports patients in accessing clinical trials and registries. Website: psoriasis.org
United Kingdom
Psoriasis Association is the UK’s leading patient charity, founded in 1968. It provides information leaflets, funds research grants, runs a telephone and email helpline, and publishes the magazine Pso. The Psoriasis Association also advocates at government level and has been involved in NICE technology appraisal consultations for psoriasis treatments. Website: psoriasis-association.org.uk
PAPAA (Psoriasis and Psoriatic Arthritis Alliance) provides patient information resources with a particular focus on psoriatic arthritis. PAPAA publishes detailed guides on treatments, living with psoriasis, and workplace issues. Website: papaa.org
The Psoriasis and Psoriatic Arthritis Charity (formerly Psoriasis Action) campaigns for improved services and funds research into the psychological impact of psoriasis.
Online Communities and Support
Online peer support communities are a valuable supplement to formal organisations. Patients frequently report that connecting with others who share their experience reduces feelings of isolation. Major online communities include:
- r/Psoriasis (Reddit) — one of the largest online psoriasis communities, with active discussion of treatments, daily management, and emotional support
- NPF Community — the National Psoriasis Foundation’s moderated online forum
- HealthUnlocked Psoriasis — a UK-based moderated community linked to the Psoriasis Association
- Social media groups on Facebook and Instagram — numerous patient-led groups organised by country, treatment type, or subtype (e.g. scalp psoriasis, pustular psoriasis)
Online communities can be supportive, but they may also contain misinformation. Always discuss treatment decisions with a dermatologist or other qualified healthcare professional.
What These Organisations Offer
Most psoriasis organisations provide some or all of the following:
- Information: Evidence-based leaflets and web content on disease management, treatments, and comorbidities
- Helplines: Telephone and email support staffed by trained advisers or nurses
- Support groups: Local or online groups for peer connection
- Research funding: Grants for psoriasis research, often prioritised by patient advisory panels
- Advocacy: Engagement with governments, regulators (NICE, FDA, EMA), and healthcare systems to improve access to care
- Events: Annual conferences, awareness campaigns, and World Psoriasis Day activities