How Can I Help?

Thanks for your interest in making a difference. On behalf of anyone living with a rare disease, we thank you.

Ben’s Friends is a 501(c)(3) non-profit, and your donations is tax-deductible.

1. Help a Friend or Relative: if you know someone with a rare disease, forward them our web site or ask them to contact us at

2. Connect Us: if you have a connection you think would be interested in helping us or partner with us (PR consultants, reporters, medical professionals, hospitals) please let us know at

3. Help Spread the Word: help us spread the word about or a specific patient community. Follow us on Twitter at (@bensfriends). If you have marketing or PR expertise, we would love to hear your ideas about ways to spread the word and help more people. Contact us at

4. Help Us with PR: our biggest need is to get this story in front of reporters and bloggers. If you have a blog, blog about us. If you know a blogger, send them a link to our web site.

5. Help Us Increase Our Google Rank: most people find us via Google. If you operate a web site, linking to helps make our patient communities easier to find for the patients who need us.

6. Ben’s Friends is run by an army of volunteers and relies on donations to fund operations. Please click here to make a contribution.

7. If you shop on Amazon, please sign up for their Smile program that gives money back to Non Profits (at no cost to you). Go to, choose “Bens Friends” (Houston) as your charity of choice, then whenever you shop on Amazon make sure to go to and help thousands of rare disease patients at


Member’s Talk

“I’m excited to be representing such a great organization like Ben’s Friends. Ben’s Friends has helped so many, and we’d love to know how we’ve helped you, too. We’ve seen the numbers grow and grow. Since our first year, our membership has increased from 23 to 50,946! In just the last 5 years our membership has increased an amazing 620%.

We look forward to helping many others, and we can do so with your help and support.”

NEW Executive Director of Ben’s Friends Gretchen Flatau

Continue reading “Member’s Talk”

Mark Krueger and Associates,Inc Blog Featured Ben’s Friends

Mark Krueger & Associates, Inc., one of the leading consultant to pharmaceutical, biotech, device and diagnostic companies features Ben’s Friends. John Stamler, Ben’s Friends Board Member, contributes on MK&A page as guest blogger. Stamler wrote that Ben’s Friends patient communities ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

Risk, UK Blog Features Ben’s Friends

Dr. Richard A. Lawhern, Ph.D., community moderator, content author and Resident Research Analyst with “Living With TN”, an online community among Ben’s Friends, writes about the rapid growth of the Ben’s Friends online communities, as a model for medical and mental health collaboration between clients and physicians. Read more about his article, “I Get By With a Little Help from my Friends”

Ning Features Ben’s Friends

Ning, the world’s largest SaaS platform for deploying vibrant social communities and the software platform used by Ben’s Friends to set-up communities,  highlighted Ben’s Friends on its Community Spotlight blog as a wonderful network of support communities for people with rare diseases.  Crystal Coleman of Ning Glam Media also interviewed John Stamler,  a member of Ben’s Friends since 2010 and survivor of Atrial Septal Defect, about the inspiring and encouraging activities on Ben’s Friends communities.  Read more from this link.

World Orphan Drug Congress USA Names Ben’s Friends as One of the Top 50 Social Media Influencers in Orphan Drug and Rare Disease

Ben’s Friends appears in the list of Top 50 Social Media Influencers in Orphan Drug and Rare Diseases as reported by Caroline Hornby, Marketing Director for the World Orphan Drug Congress. Those in the list–which includes patient advocacy groups, healthcare industry and government–were selected based on activity levels, engagement and community reach.

Kellogg’s Alumni Magazine Features Ben’s Friends

Ben Munoz and Scott Orn, both Kellogg Alums Class of 2007, are incredibly honored and grateful that Kellogg’s Alumni Magazine featured Ben’s Friends in the Summer 2013 edition. The Kellogg community has been so supportive of Ben’s Friends, with the Class of 2007 deserving special recognition for the fundraising support it has provided. Kellogg was kind enough to include a timeline that shows Ben’s Friends annual progress. We’re humbled to be recognized by Kellogg and look forward to many more years of social impact at Ben’s Friends.