Find people who get it.

There is a particular relief in talking to someone who doesn't need the background explained. Support groups and Patient Voices ambassadors connect you to people living with the same condition, or something close enough to it.

How it works

Condition-specific groups

Most groups are built around a single condition and run mainly on WhatsApp, which is where people actually are. Some meet in person, some hold online sessions, and some are simply a place to ask a question at eleven at night and get an answer from someone who has been there.

Patient Voices ambassadors

Ambassadors are the people who hold these communities together, usually patients or parents themselves. They lead the groups, welcome new families, raise awareness for their condition, and bring what they're hearing back to us so it informs our advocacy.

If there isn't a group for your condition

With over seven thousand rare diseases identified, there often isn't one yet. We can connect you with individuals living with the same or a similar condition, or help you start something if you'd like to.

Want to lead one?

Ambassadors get training, resources and support from our team. You don't need medical knowledge or a professional background, you need lived experience and a willingness to be the person others can reach.

Become an ambassador

Already run a group?

If you lead an independent support group or patient organisation, we'd like to work with you rather than duplicate what you're doing. Register your group and we'll connect you to resources, the wider community, and the policy work that affects your members.

While you're here

Joining the patient registry means your condition is formally counted in the data we use to argue for better care. It also helps us connect you to others with the same diagnosis as the community grows.

Join the registry

Not sure where you'd fit?

Tell us your condition, or what you're dealing with if you don't have a name for it yet, and we'll point you to the right people.

Talk to a navigator