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.
# # #
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.
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 firstname.lastname@example.org. .
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
+1 917 579 5692
Ben’s Friends Media Contacts
Co-Executive Director, Ben’s Friends
+1 406 544 3860
Co-Executive Director, Ben’s Friends
+1 613 639 6713