The Specialised Healthcare Alliance (SHCA) has published the report ‘Rare diseases, common inequalities: bringing rare diseases into the health inequalities agenda’
The report contains 8 key recommendations to support equitable access to services for people with rare diseases, in comparison to those with more common conditions, ensuring that everyone has the same opportunity to live as healthily as possible.
The recommendations cover the lack of knowledge, understanding and awareness among healthcare professionals; poorly coordinated care; the scarcity of specialised centres/services across the UK; the lack of funding for rare disease research; accessing clinical trials; the delays in medicines approval; need for better mental health support and the financial impact of a rare disease.
