About Rare Disease Support Community


#1

What is Rarediseases.Bensfriends.org?

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.

 

Who can join Rarediseases.Bensfriends.org?

If you or your family has been affected by any rare disease , consider Rarediseases.Bensfriends.org your second home. Rarediseases.Bensfriends.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.


What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.

 

BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

 

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our
videos at http://www.youtube.com/BensFriendsVideos.