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If your family has been affected by Rare Diseases, consider Ben's Friends Rare Diseases your second home.
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Ben's Friends Patient Communities - support group for patients affected by rare diseases
All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
Hi everyone, I recently have been diagnosed with a skull based Chordoma. Chordomas are 1 in a million. They are rare and that means there have been few studies. A panel of top surgeons met this last friday and a Dr Akagami has agreed to see me and…Continue
HiI was wondering if anybody else had Myotonic Dystrophy as I am not really sure about it. My real Dad had this disease tho I wasn't in contact he died nearly a year ago. I got a copy of his death certificate and saw he had DM. My mum suggested I…Continue
I am starting to think that my sister and I are the only ones in the world going through this. I guess it is really rare.Anyone?Continue
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Rarediseases.Benfriends.org serves as an "incubator" for new communities of all diseases that do not yet have a dedicated community. Initially, a group for each rare disease is created and when the group gets larger, a dedicated community will be developed.
Rarediseases.Bensfriends.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with rare disease.
If you would like to work with us on expanding one of our groups to be a fuller community, please email us at email@example.com
Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to firstname.lastname@example.org.