This category includes charities, not-for-profit organisations and patient advocacy groups. These groups play a crucial role in supporting people living with a rare disease and their families, driving and funding research, building communities and networks, raising awareness and giving a voice to people living with a rare disease.
Raremap does not aim to list every patient organisation in the UK, but it includes umbrella bodies, representative organisations, disease-agnostic support/funding organisations, and smaller organisations that have self-registered.
- Represent and advocate for people living with a rare disease and their unmet needs
- Influence policy at a national level, based on lived experience of people living with a rare disease
- Promoting and enabling patient partnership in research.
- Funding research
- Developing translational programmes and models for investment
- Provide social and care support where needed in their respective community
- Provide financial support to individuals
- Provide platforms for uniting communities
- Patient and public involvement and engagement (PPIE) and outreach
- Building partnerships across the sector
- Collecting and voicing patient experience data (registries, surveys, natural history studies)
- Building alliances with other organisational categories
