Welcome! You're not alone.
If your family has been affected by Rare Diseases, consider Ben's Friends Rare Diseases your second home.
Read More from our First-Time-User Guide
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.
Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!
Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.
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 firstname.lastname@example.org
Help spread the word about our newest communities by sharing on your Facebook wall: Acute Disseminated Encephalomyelitis, ADD/ADHD, Addison's Disease, Amyloidosis, Disabilities, Ehlers-Danlos Syndrome, Fabry Disease, Guillain-Barre Syndrome, Lyme Disease, Myositis, Narcolepsy, Nephrotic Syndrome, Sjogren's Syndrome, Traumatic Brain Injury, Von Willebrand's Disease.
I have cold clammy,sweaty hands & feet. I've recently seen my doctor due to my feet turning blue & lots of pain in fingers. I sometimes feel like I'm walking on ice breaks. I consistently have cold feet that can go tingling & numb. I…Continue
We are working with a non profit consulting firm called Bridgespan that helped us put this survey together to help us quantify the benefits of Ben's Friends. The hope is that we can use the data to make the communities better and to apply for grants…Continue
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 email@example.com.