This category includes charities, not-for-profit organisations and patient advocacy groups. Our directory will not attempt to list all organisations in this category in the UK. Instead, we will list umbrella organisations with 100+ member charities, bodies representing this group of organisations and organisations that offer disease agnostic support or funding in the rare disease field.
- 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
- 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
