Key points

  • Patients’ organisations have traditionally provided support services and a platform for members to share their experiences. Increasingly, however, they are becoming activist, taking a role in public awareness campaigns and advocacy for more research or better healthcare, and forging international partnerships with like-minded groups.

  • By training ‘expert patients’, organisations are making sure patients have an input into new guidelines and treatment recommendations, and healthcare planning.

  • Key challenges for the future include maintaining funding levels – particularly for organisations devoted to rare diseases – addressing health inequalities and improving the health literacy of the public.

  • Across Europe, a total of 164 respiratory patient support groups have been identified, representing more than a dozen different disease areas.

See the entire Patient organisations and the European Lung Foundation Chapter