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Patient Communities for People with Rare Diseases

  • Our Story
    • Mission
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    • Contact Us
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Author: Rose Andrade

Ben’s Friends Newsletter November 2016

November 5, 2016Rose Andrade

     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…

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BioBlast Matches Up To $5,000 In Donations To Help Build A New Home For Ben’s Friends

December 16, 2015Rose Andrade

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…

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CMX Hub Features Ben’s Friends

October 11, 2015Rose Andrade

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…

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95% of Rare Diseases have No Drug or Therapy

September 17, 2015Rose Andrade

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:…

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Is the Price of Generic Drugs in the US Going Up?

September 17, 2015Rose Andrade

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…

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How Can I Help?

September 15, 2015Rose Andrade

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…

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Member’s Talk

September 15, 2015Rose Andrade

"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…

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

February 20, 2015Rose Andrade

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…

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Global Genes Project Features Ben’s Friends

April 22, 2014Rose Andrade

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.

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Risk, UK Blog Features Ben’s Friends

March 30, 2014Rose Andrade

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…

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