Welcome! You're not alone.

If your family has been affected by Rare Diseases, consider Ben's Friends Rare Diseases your second home.


1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Read More from our  First-Time-User Guide

Ben's Friends Patient Communities - support group for patients affected by rare diseases

Need a Doctor or Specialist?

Does Your Rare Disease Pain Have You Considering Suicide?

First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK
for members in the United States, or for international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Need a Second Opinion?


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.

Blog Posts

Community Newsletter

Posted by Ben Munoz on March 4, 2014 at 12:00am 0 Comments

Dear RareDiseases Family and Friends,

We're very happy to announce that we were just approved as an official nonprofit by the IRS!!
This means that we are eligible for corporate…

Virtual colonoscopy

Posted by Ferber on February 15, 2014 at 11:32pm 1 Comment

I had regular colonoscopy in. 2012 but but when there was still some fecal mater, they said I had to have a 'virtual colonoscopy' so I went for one and it was-- awful! I had never heard of them before, but if anyone mentions it--they are terrible!… Continue

ClinicalTrials.gov Studies

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5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.    
Specific doctor or hospital names in a positive context are welcome.
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Thanks for your cooperation.

Community Moderators




Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.



Started by Rob Lawrence in General Mar 28. 0 Replies

Is there anyone here dealing with "Adhesive" Arachnoiditis? It seems to be extremely hard to find anyone that knows what this is and what to expect, I guess I'm kinda a loner here.

raynauds phenomenon

Started by rellieb in General Mar 21. 0 Replies

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

Ben's Friends Member Survey

Started by Scott Orn in General Mar 21. 0 Replies

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

Rare Disease Memorial Forum

Started by Ben Munoz in General Mar 2. 0 Replies

 Let us remember our fellow RareDiseases members, who came here for…Continue

Join the Global Genes Webinar on Health Insurance Issues

Find out how you can better evaluate what option is best suited for your individual needs. Learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.

Join the  FREE Navigating Insurance Issues Webinar on April 30, 2014 at 10am PST / 1pm EST / 6pm in UKRegister Now!

For more information about the Webinar, visit this link.

Read more about Global Genes,a 501(c)3 (non profit).

Mobile App and E-Book Available for Download!

Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

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.

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.

If you would like to work with us on expanding one of our groups to be a fuller community, please email us at info@bensfriends.org

Latest Activity

dancermom commented on Ben Munoz's group Dysautonomia
"The most helpful BF community for dysautonomia is http://www.chiarisupport.org/ Please join it…"
dancermom joined Ben Munoz's group


Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a…See More
dancermom commented on mary cimeni's group Addison’s disease
"lgt, have you joined the fully launched community for Addison's…"
dancermom joined mary cimeni's group

Addison’s disease

Addison’s disease is a rare chronic endocrine disorder in which the adrenal glands do not produce…See More
dancermom joined Ben Munoz's group

Lyme Disease

Lyme disease is caused by a bacteria called Borrelia burgdorferi, transmitted by a tick, that…See More
Leslye Wilson commented on Ben's Friends Group's group ART & POETRY
"This is a poem that I had written last year for a poetry challenge where the topic was -…"

Ben Munoz posted a page
Scott Orn left a comment for Cindy Yarbrough
"Wonderful welcome Cindy! One tip, if you have specific questions it's best to start a New…"

Blog for Bens Friends.org

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Best of Ben's Friends

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What is Best of Ben's Friends?

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 info@bensfriends.org.



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