Antidote, a digital health company who aims to accelerate the development of breakthroughs treatments, making medical research accessible to all, held a roundtable discussion named, “How are Rare Diseases Treated?: An Advocate Conversation”. Ben Munoz, Co-Founder, Ben’s Friends joined the conversation as they delve into the role of medical research in the rare disease space. Read more from Antidote’s post.
Ben’s Friends co-founder Ben Munoz shared in CMX Hub how to build trust from patients with rare diseases.
According to Munoz, making members feel welcomed is key. The welcome is the most important piece of the community membership cycle. When a new member joins, they are warmly greeted by lots of veteran members who trusted the community and so new members feel the warmth and friendliness. Read more from this article.
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.
The Global Genes Project, leading rare and genetic disease patient advocacy organization in the world, highlighted Ben’s Friends bringing unique communities to rare disease patients. Read more from this article.
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”
Ben Munoz and Ben’s Friends Patient Communities were featured in Forbes over the weekend! Thanks to the Members who talked to the author, Sarah McKinney.
To mark the rare disease themed month and rare disease day 2014, Pharmaphorum’s interviewed LWA moderator Alan Tomas. Here he shares his experience and discusses how powerful the internet can be to patients such as himself in giving them a voice.
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.
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.
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.