About Living With Rare Disease Support Community

LivingWithRareDisease.Org is a referal and support site for all of Bens Friends Communities. Our hope is that patients, caretakers, and family/friends effect by rare disease and searching for support and information will use our Community and Latest Topic Guide to locate one of our over 40 support communities to get and give support with others suffering from their Rare disease. If there isn’t a community for their disease, we welcome them to join our Rare Disease Community and meet with others suffering from a Rare Disease or Caring for someone who is. We also suggest you go to our Want A Community For Your Condition section and tell us about your condition so we can add it to our list of Future Communities. (we are responding very quickly to most requests)

You might also want to visit our Rare Disease 101 Category. 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.

Bens Friend’s respects your privacy. For that reason, while everyone can see our communities, only MEMBERS can post or message others. We ask a few profile questions when you apply and review all applications to make sure you are who you say you are before your membership is approved. Thanks for your understanding. To join just go to https://rarediseases.bensfriends.org/  click on “sign up” on the right side of the Rare Diseases Support Community Bar towards the top.


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