Rare Diseases Support Community

Category Topics


Rarediseases.Benfriends.org is a place where members can create a group for those conditions that do not yet have a dedicated community. It all begins here. Start a group by clicking the Groups tab above. Invite others to join. Post discussions in your group to build your community. Please note that inactive groups will be removed after six months to make room for new groups.

Bens Friends

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them

Want a community for your condition?

We have over 30 Communities already perhaps one fits your needs. We are using this site to determine which we should open next. Your input and interest is critical to our planning

Rare Disease 101

Included in this category are resources written by members for members and notes from the moderators. We strongly encourage all members to explore these pages. This category will grow over time to include more and more information


Open discussion.


Member Photos and videos

Recommend a Doctor, Therapist, or Clinic (Positive

Want to recommend a doctor, therapist, or clinic? Positive review only, please.

Site Feedback

Discussion about this site, its organization, how it works, and how we can improve it.

Navigating the NHS

This group is for discussions about navigating the UK’s National Health Service. You must request membership in rarediseases.bensfriends.org in order to join the group. When you sign up, if your “story” is “Wish to join NHS discussion.”, we’ll will let you in!