The Power of Community for Rare Disease Patients 18

Bens FriendsRDD_Infographic_20130225Wikipedia states:

In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects less than 200,000 persons in the United States,”[2] 

To give a sense of magnitude and impact, there are roughly 7,000 rare diseases and collectively they affect 300 million people worldwide. 1 in 10 people in the US suffer from a rare disease. (Source: Siren Interactive)

Coping with rare disease

Those with rare diseases can face serious challenges. Attaining a proper diagnosis can be difficult, even among the more well-known rare diseases. Symptoms are often confusing and mis-diagnosis is not uncommon.

In fact, according to the FDA, for one-third of those with a rare disease, accurate diagnoses can take one to five years. And, patients face challenges associated with finding and accessing care:

…  [patients are] often are so isolated that they may never know anyone else with the same disease. Patients often must travel long distances to visit the few doctors knowledgeable about their illnesses, and the costs involved with diagnosis, treatment, and other related expenses can be exorbitant.

With a little help from my friends

One way rare disease patients have found a way to meet their challenges is by connecting with one another online. Bensfriends.org is one such place where patients and caregivers are conversing, sharing and supporting each other.

Bensriends.org started out of one person facing a rare, life threatening disease called arteriovenous malformation (AVM). From Ben Munoz, founder of Bensfriend.org:

I survived a life-threatening brain hemorrhage from a rare form of stroke called an AVM. The loneliness and anxiety I faced led me to create an online support community so that I could connect with other AVM patients. Then in 2008, former classmate and friend Scott Orn and I founded Ben’s Friends Patient Communities.

AVM Community

When Ben started to connect with other AVM survivors, it became apparent that “community is the best medicine.”

Bensfriends.org has over 33 on-line rare disease communities with more than 29,000 members globally – and the community continues to grow, with over 1,200 members joining per month.   Bensfriends.org is run by 130 plus moderators that help to run each of its patient communities.  The moderators are all volunteers, whose compensation is in serving their community.

Find treatments and ways to manage disease

One of the problems for rare disease patients is finding ways to treat and manage their disease. For many, treatments are partially effective at best, and for some there are no effective treatments at all. If there are effective treatments, they can be hard to find.

Being in a supportive community can help.  Consider W.H., who suffers from Chronic inflammatory demyelinating polyneuropathy when he says,

Before joining [Ben’s Friends] I knew of no significant treatment alternatives other than the IVIG treatment that I have been getting for years.

Shortly after joining the group, I learned of a treatment that could shut down the autoimmune response associated with my CIDP. I then spoke to people at Northwestern University that are overseeing this treatment research project. They report a 60-70% success rate. I was also able to make phone contact with one of our group members that went thru the procedure. She is thrilled with her results. I then spoke to my doctor about it and he pointed out a less aggressive option that could also shut down my disease-related autoimmune response.

Following clinical research is hard

We’ve established that rare disease patients have unmet needs, and that current standards of care and treatment often fall short of being effective.

But, what about the new treatments that are emerging and being tested? It makes sense that Benfriends.org community members have a high interest in emerging treatment options under investigation in research and development pipelines.

We’re learning that finding, understanding, and accessing clinical research for rare disease patients is too difficult and becoming aware of a potentially life-changing new research and development treatment is very challenging.

What might be possible?

What if patients could follow already available, public information tailored specifically to their disease?

Can we make it easy, so that patients don’t need to sift through specialized medical terminology, or wade through vast amounts of data from Google searches?  Can we make it up to date, relevant and provide just what is needed, when it becomes available?

How can we surface new knowledge from community members – could we have communities involved in curating that knowledge to assure it’s finely tuned to members needs?  Might people want to follow very tailored research, or even the people who are doing tailoring?

Could social models for curating information like Pandora or Spotify apply to open clinical research information?

We’re in the midst of exploring all of these.  As we gain insight and bring experiments, prototypes and demonstrations to light, we’ll be sharing them in the open with Bensfriends.org and anyone who might find them interesting or valuable.

Why it matters

Armed with valuable clinical research data in an on-line community, rare-disease (and all) patients can:

  1. Stay on top of the newest treatments and research related to their disease
  2. Go beyond geography – internationally – to tap into globally available information on research and trials that is not available locally
  3. Engage with their doctor to share and understand how emerging treatments might apply to their condition
  4. Understand where relevant trials are being conducted, and explore whether they might be a candidate
  5. Learn about specific clinical trials and investigator sites of interest, and understand how to gain access to them
  6. Ultimately, contribute to driving forward clinical development efforts by sharing their knowledge, or joining a clinical trial

We’re privileged to be exploring with Bensfriends.org to better understand their clinical research information needs, and ways to meet them. We look forward to continued collaboration, and to real demonstrations of ways to bring clinical research information to people and communities that need it.

18 comments

    • Thank you Eric – the key to filling up that room is guidance from patients combined with a commitment to experimentation to bring innovative, valuable ideas to life. We look forward to continuing our work with BensFriends and others to do just that…

      • Agreed. Others can do things like this as well! Also, a problem with individuals running “patient communities” such as this (and others I’ve found) is that there is much bickering, etc. If there are disagreements (which there is going to be) an individual running their own site has free reign to do what they choose. I just want to encourage others that there are OTHER avenues to find and provide support as well! 🙂

  1. I am part of one of Bensfriends communities. I have found so much support and so many friends. I feel like the people i have met are like family. We may never meet but we care about each other and are there for one another.

  2. Thanks Stephanie for your comment. We at Lilly COI see and appreciate the power of community that Bensfriends brings to people who are a part – and, we see tremendous potential in treating each other like family to both provide support as well as to drive forward drug development.

  3. I too am a member of Bens Friends as I have a rare disease called erythromelalgia. It has been a such great help to be able to speak to others going through the same problems and also the share information leading to diagnosis and treatment.
    Living in Great Britain I would ask how to get something like your article into the public domain so that others suffering from a rare disease get to know about BensFriends

    • Thanks much for your comment. I admit to perhaps not understanding your question about how to get something like this article in the public domain, as the blog post/article is absolutely available openly in the blogosphere – which is as public domain as it gets. Anyone is welcome to link to it, or reference it as anything else on the open internet. I’d welcome more of your perspective, and thanks again for the comment!

  4. I am a moderator on one of the Bensfriends communities, and I can say that I have gotten so much more than I’ve been able to give….. its been a blessing to be a part of this.

  5. Very enlightened to hear about the opportunities unfolding for Rare Diseases. Simply CANNOT thank you enough!

  6. Raising awareness of less known diseases and syndromes is to be applauded. I agree the most important factor in managing things with one of these diseases is made easier from the support you receive from your community. Thank you Bensfriends.org for being there for me. Thank you Eli Lilly for doing this article.

  7. I am all for raising awareness but despite all the hoopla, whenever one goes to the neurologist, the is the same hopeless and negative assessment. Sorry lady, but there is no cure. This statement by Eli Lilly, sadly, says nothing. Ben’s Bestfriends.org has not provided sufferers with any hard facts. Sorry but I guess it is better than nothing. There are always these grand statements and no follow-up. Neta

  8. Thank you for raising awareness. I am a part of the “rare disease” community and awareness may help. We are all a part of a group who feels alone. I struggle daily, but at least I can still struggle. I am blessed more than I deserve.

  9. I too am part of a rare disease community, and while I applaud “Ben’s Friends” for their mission, I would encourage them to make sure they include ALL in their “group”. I have had a run-in with them and wasn’t treated well. I had to blaze my own trail in dealing with my rare diseases – Cowden’s Syndrome and Lhermitte-duclos disease. Thankfully I have connected with a handful of CS and LDD persons and have found such support from them. Keep on keepin’ on!

  10. Hello, Ben Freinds has helped me to realize that am not alone!! This a great place for me to talk and express how am feeling and talk freely with people who understand me! Thanks to all !!…Beverly L.

  11. Pingback: Help Grow the Rare Disease Congressional Caucus | CushieBlog

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