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Give the Gift of Support to Patients with Rare Diseases
Scott Orn
1,489 Facebook Friends
Austin, Texas
United States
2 Team Members

About Ben's Friends Patient Communities

My name is Ben Munoz and my organization, Ben's Friends, builds Online Support Communities for Patients with Rare Diseases. Patients with rare diseases struggle to find support offline and online because these conditions lack the critical mass to organize local support groups and Internet sites don't cater to these patients because they are not economically viable through advertising. 

Even your family lacks the information and understanding to give you all the support you need. It can be very lonely and depressing - I know, because 5 years ago while at Kellogg Business School, I nearly died from a rare condition similar to a brain aneurysm. Today, my friends and I have built a network of 30+ support communities, each catering to a specific rare condition. I'm asking for your financial support so we can continue supporting these 30+ communities (and growing) that serve approximately 30,000 patients and their loved ones a month. 

Ben�s Condition

My condition is called Arteriovenous Malformation (AVM) and it's extremely rare. I was saved by emergency surgery but 50% of the people who have an AVM bleed are not so lucky. My condition changed my entire outlook on life and I decided to give back to patients who have rare conditions by becoming a Doctor. After finishing business school, I enrolled at UT Austin to complete my medical school pre-requisites. This summer I took the MCAT and applied to medical school. I'm now on the interview trail, anxious to see where I'll be in the Fall.

While recovering from my AVM, I couldn't find a single support group in the Chicago area so I turned to the Internet for help. Unfortunately there were no Internet support groups for AVM patients either! I finally found the support I was looking for by creating my own group at AVMSurvivors.org. Other AVM patients found us and we grew into a close-knit online family of AVM survivors.

In 2008 we started more patient communities and Ben's Friends has been tripling in size every year since. Almost all of our members tell us that they have never before spoken to anyone with their rare disease in their entire lives! They are excited and comforted to find hundreds of people experiencing the same emotions they are experiencing. They don't feel so alone anymore.

Donations are Appreciated

We launched Ben's Friends as a social enterprise, to do good in the world while breaking even. Over 90 volunteer moderators (patients themselves) volunteer their time and none of us take any compensation for our efforts. We have also contributed over $20,000 of our own money because we believe in the cause. The very few online health sites that serve patients with rare diseases, including Ben's Friends, have a very difficult time generating revenue because the patient populations are so small and fragmented. Most shut down eventually.  We don't want to charge a membership fee because most of our patients are on disability and money is very tight for them. To date, we've been incredibly fortunate to receive donations from friends and patients totaling over $15,000.

I'm writing to ask you for help in the form of volunteer time and/or a financial donation. We could use help getting the word out by leveraging your personal network. In addition, we would be incredibly grateful if you would make a donation to our fundraiser.

Our monthly costs are approaching $2,000 and a $100 donation would fund one of our communities for 3 months. A $500 donation would allow us to start a brand new patient community for a rare disease population that usually has no other option. We constantly have patients writing in to ask us to start a support group for them. We have a waiting list of 100 support groups that we could start tomorrow if we had the funds. If one of your loved ones has been touched by a rare condition, we would be happy to start a community for that condition.

Thanks for reading my story and for the support along the way. Ben's Friends is truly a little Internet miracle and we want to keep it going.


Main website: BensFriends.org 

Patient Testimonials: YouTube.com/BensFriendsVideos & blog.BensFriends.org

Press: BensFriends.org/welcome/in-the-news

Team: BensFriends.org/welcome/team

Huge thanks to our sponsors Molly Mutt, Tiny Prints, the20 Wines and Sports Basement. These are businesses run by wonderful people who love and support Ben's Friends. We couldn't do it without them!

Ben's Friends Traffic Per Month :)

(P.S. We have included a Quantcast traffic/visits chart below.  According to Google our traffic is 35% higher & we quote those figures, but the Quantcast chart is pretty :))

A Beautiful Testimonial by Member & Moderator - JC

raised by 182 people in 1 month
143% funded
No time left
$15,000 USD goal
Flexible Funding This campaign has ended and will receive all funds raised.
Campaign Closed
This campaign ended on January 18, 2012
Select a Perk
  • $1USD
    A Buck Helps Four Patients!

    Ben's Friends spent $15k in 2011 to help roughly 60,000 patients and loved ones throughout the year! Your "Buck" will help 4 people find love and support. :)

    1 claimed
  • $5USD
    Help 20 Patients w/ a "Fiver"

    We spend about a quarter ($0.25) on every patient and loved one we help. A Five Dollar bill will help 20 people. :) Plus, we'll send you a copy of our ebook when published in January.

    8 claimed
  • $25USD
    Support for 1 Month - Thanks!

    You've covered the cost of a month for one of our mature networks (AVM, Trigeminal Neuralgia, Ataxia). These groups are so strong - thanks for keeping them going!

    Perk: 10% off at Molly Mutt, maker of the world's greatest dog duvets. We will send you the code. Thx Molly! :)

    34 claimed
  • $50USD
    New Support Network - 1 Month!

    New support networks take a ton of elbow grease. We spend money on configuring them & promoting them. Your $50 donation will make our newest networks (Autism, ADHD, Hepatitis C, and ADEM) a success!

    Perk: $10 off Shipping at Tiny Prints, maker of everyone's favorite Holiday Cards! + Molly Mutt discount. We will send you the code. Thx Ed & Ashish! :)

    28 claimed
  • $100USD
    3 Months of Support - Amazing!

    We have some incredible groups that aren't quite mature. Give them a little extra love so they reach critical mass. Your $100 gives these networks a 3 month boost: Lupus, Fibromyalgia, Chiari, Psoriatic Arthritis, Multiple Myeloma, ASD, Synovial Sarcoma and PSC)

    Perk: $15 Gift Certificate at the20 Wines & Portable Casks, terrific wines in convenient casks! Will send you the code. + Molly Mutt & Tiny Prints discount. Thx Rion & Scotty! :)

    57 claimed
  • $350USD
    1 Year of Support - Holy Cow!

    You've sponsored a support group for a full year! You are helping thousands of patients!

    P.S. You'll receive a $50 Gift Certificate to Sports Basement, the best sporting goods store around. Plus you'll get the Molly Mutt, Tiny Prints and the 20 Wines perks too.

    9 claimed
  • $500USD
    Choose the Next Support Group!

    You're an amazing person for contributing so much. If a loved one has been touched by a rare condition, please let us know and we'll start a support group for their condition.

    P.S. You'll receive the an incredible video thank you from our members! Plus you'll get the Molly Mutt, Tiny Prints, the20 Wines, and Sports Basement perks too.

    4 claimed
  • $1,000USD
    Humongous Donation!

    Ben's Friends has touched you in a very special way and you want to make a humongous donation that will pay for 3 networks in 2012. Thanks from the bottom of our heart!

    P.S. We'd love to do something truly special for you. We're thinking things along the lines of Ben making you dinner or Scott taking you wine tasting! We'll brainstorm together, plus you'll get the Molly Mutt, Tiny Prints, the20 Wines, Sports Basement and video thank you perks too.

    3 claimed
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