Interaction Map

This category includes universities and other institutions whose primary function is to carry out rare disease research, such as NHS, industry, consultancies and charities.

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.

This category includes organisations that create and disseminate communications around rare disease, for example online or print publications, and those that manage campaigns to raise awareness of and funding to support rare disease research.

This category includes the organisations, programmes and networks that provide the supporting services or infrastructure that is needed for rare disease research to take place.

This category includes civil services, regulatory and decision makers, government departments and research councils. Organisations within this category are varied and therefore they will not fulfil all of the responsibilities listed here.

This category includes organisations delivering healthcare, e.g. NHS Trusts.

This category includes pharma, biotech, contract research organisations (CROs), medical technology (MedTech) developers, contract development and manufacturing organisations (CDMOs).

This category includes programmes or networks from across the UK that carry out rare disease research. They may be primarily funded by government or charitable and not-for-profit organisations and are often delivered in partnership by multiple stakeholders.