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