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.
BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities to a new online platform. BioBlast is a clinical-stage global pharmaceutical company focused on the research and development of treatments for people living with rare diseases.
“We are focused on improving the lives of people suffering with symptoms of rare genetic diseases, like OPMD and SCA3,” stated Paul Firuta, Chief Commercial Officer, BioBlast, “and are excited about the opportunity to support Ben’s Friends in creating a new online homes for the OPMD and SCA3 communities.”
Ben’s Friends is hoping to complete the migration of the OPMD and SCA3 communities early 2016.
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.
Rare disease “affect more people than the biggest headline-grabbing diseases on the planet.” View this infographic produced by CrowdMed to see the stats:
A 1000% price hike in the cost of generic drugs? Can that be true? According to this recent article from the AARP Public Policy Institute (PPI), 27% of the generic drugs prescribed last year went up in cost. Follow this link for the full story:
The Cost of Generic Drugs Spike
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 email@example.com
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 firstname.lastname@example.org.
3. Help Spread the Word: help us spread the word about BensFriends.org 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 email@example.com.
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 BensFriends.org 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 Smile.Amazon.com, choose “Bens Friends” (Houston) as your charity of choice, then whenever you shop on Amazon make sure to go to Smile.Amazon.com and help thousands of rare disease patients at BensFriends.org.www.youtube.com
“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
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.