Ten Ben’s Friends Members and Friends are traveling to Glacier National Park This August for five active days to prove rare Disease Can’t stop - us not on Land or…
Author: Rose Andrade
2018 Ben’s Friends Community Network Update
The following new communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben's Friends Patient communities and may be of interest…
Ben Munoz Joins Antidote Rare Disease Conversation
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?:…
Ben’s Friends Newsletter November 2016
MESSAGE FROM BEN Hi, everyone, I hope this message finds you and your loved ones well. Ben’s Friends Patient Communities was founded in 2007; I had just…
BioBlast Matches Up To $5,000 In Donations To Help Build A New Home For Ben’s Friends
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…
CMX Hub Features Ben’s Friends
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…
95% of Rare Diseases have No Drug or Therapy
Rare disease “affect more people than the biggest headline-grabbing diseases on the planet.” View this infographic produced by CrowdMed to see the stats: The Epidemic No One Is Talking About:…
Is the Price of Generic Drugs in the US Going Up?
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…
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…
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…