Ben’s Friends, Antidote Technologies, and MyRareData Collaborate to Offer Virtual Rare Disease Clinical Trial Recruitment

Partnership will provide 75,000+ patients across more than 40 rare conditions with access to critical clinical trial information online

New York, NY (June 1st, 2020) — Ben’s Friends, Antidote Technologies, and MyRareData today announced a collaboration to bring information about clinical trials, including virtual pre-screening, to the rare disease community. With an approved treatment available for just five percent of all rare diseases, advancing medical research is a top priority for patients with rare conditions. Yet, recruiting patients for rare disease clinical trials is challenging, since a small number of patients are spread out geographically, and 50 percent of rare diseases impact the pediatric population.

Ben’s Friends is a network of 40+ web communities for people impacted by rare disease. Through a partnership facilitated by MyRareData, Antidote is offering Ben’s Friends’ 75,000+ members the opportunity to receive information on clinical trials for their condition. When a patient receives a trial match, they will be able to determine whether the trial is right for them through an easy-to-understand online pre-screener. The ultimate goal of this partnership is to accelerate this important research.

“We understand that finding the right clinical trial is a challenge, particularly for the rare disease community,” said Lindsey Wahlstrom-Edwards, Head of Partnerships at Antidote. “That’s why we’re proud to offer digital pre-screening to allow patients to determine what trials are a fit.”

“Research is critical for the rare disease community, and we find that the vast majority of our members opt in to learn about relevant clinical studies,” said Ben Munoz, Founder and Chairman of Ben’s Friends. “With 128,000 unique visits per month, we believe this partnership will allow us to contribute to rare research at scale.”

By connecting rare disease patients with research where they are already looking for help, this collaboration has the potential to make a real difference in the speed at which orphan drugs make it to market.

“Ben’s Friends is the only rare disease online support platform managed by patients themselves,” said JC Muyl, Founder of MyRareData. “They are in a unique position to help rare diseases patients find new and better treatments, and we are pleased to facilitate this partnership.”

If you are a sponsor or CRO recruiting patients for a rare disease trial, please get in touch.

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About Ben’s Friends

Ben’s Friends is a network of over 40 safe and supportive web communities for people whose lives have been touched by a rare disease where patients advocate for and support each other in an atmosphere of medical awareness, understanding and companionship. By helping its members staying well-informed about the disease that they have, and in control of their own medical information, Ben’s Friends’ goal is to put the vast array of experiences of its members to good use in the world of medical research and development, in order to contribute to the quality of life of rare disease patients.

About Antidote

Antidote is a digital health company on a mission to accelerate medical research. In a world where 80 percent of clinical trials are delayed or closed due to lack of participants, Antidote uses precision recruitment to match the right patients with the right trials. Antidote strikes the right balance between technology and human touch to deliver high-quality patient engagement through the integration of data-driven technologies, digital expertise, deep domain experience, a diverse partner network, and personalized patient and site services. Antidote was launched as TrialReach and is based in the US and UK. For more information, please visit www.antidote.me or email hello@antidote.me. .

About MyRareData

Founded in 2019, MyRareData builds digital ecosystems that bring together rare patient groups, digital health companies, research and industry. Patients benefit from the latest technology while controlling access to their data; rare patient groups form new sustainable sources of fundraising; digital health partners benefit from higher user buy-in; and industry gains access to valuable patient data for research. Learn more at www.myraredata.com

MyRareData Media Contact

JC Muyl

Founder, MyRareData

+1 917 579 5692

JC@myraredata.com

Ben’s Friends Media Contacts

TJ Lambdin

Co-Executive Director, Ben’s Friends

+1 406 544 3860

tj1@bensfriends.org

Clasina Field

Co-Executive Director, Ben’s Friends

+1 613 639 6713

clasina@bensfriends.org


Ben’s Friends Co-hosts University of Toronto Rare Disease Conference

March 10,2019 – Ben’s Friends, our network of patient communities and Rare Disease Review, a medical and health policy journal hosted a miniconference at Hart House, Toronto. The Conference featured a variety of esteemed speakers, all joined together and shared on their expertise and experience in their individual fields. Ben Munoz, co-founder of Ben’s Friends joined the conference and talked about the challenges of having a rare condition and the importance of peer to peer support when dealing with a rare condition.

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 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.