Know Rare Launches Its New Telehealth Solution for People With Rare Disease
NEW YORK, MARCH 5, 2021 – To mark International Rare Disease Day, Know Rare announces the launch of a new telehealth solution for people with rare diseases who are interested in joining a clinical trial. For most people with a rare disease, clinical trials may be the only means to find a therapy and to engage with experts specifically for their disease. Know Rare announces the launch of a new telehealth solution for people with rare diseases who are interested in joining a clinical trial. The Covid-19 epidemic presented more challenges to people with rare diseases who cannot risk exposure and yet want and need to find a research study they can join. Study centers which may have been closed for months in 2020 are now trying to reopen and may be overwhelmed with trying to reschedule visits with their existing patients as well as patients who are want to come in for a screening.
That’s where Know Rare has come in, making it easier to keep research moving forward by connecting people with rare disease to study centers and offering the ability to schedule telehealth prescreening visits through its platform.
Know Rare was founded by a mother and son team, who bring the unique combination of senior pharmaceutical industry knowledge, digital media and tech, along with the personal experience as family members of a child with an ultra-rare disease.
“People were always coming to me to ask about clinical research, because they knew I was in the industry and might be able to shed some light on the process or through my network “ said Nina Wachsman, Know Rare Co-founder and CEO, “and they had no idea how to find a clinical study or where to start. In the meantime, I had been sitting in meetings with clinical development teams who were worried they were going to have to discontinue studies because they couldn’t find enough patients. So I decided to do something about it.”
When her son, Jake, a digital strategist at a large international media agency joined her, their success rate increased with over 19 rare disease studies, with a track record of completion of recruitment in less than 6 months.
To scale up their efforts, Jake developed a technology solution that would allow Know Rare to connect more patients with greater efficiently with study centers. “Through all the studies we conducted, the one gap was the ability to track what was going at each step,” said Jake, “so now, all the actions a patient takes from application through the first screening step is captured. We can track in real-time, spot where patients are not getting through the process, and find a way to remedy it swiftly.
The Know Rare Study Finder and Telehealth Screener is available to researchers at study centers and people with rare diseases without charge worldwide. Know Rare, like other companies that help pharmaceutical companies with clinical trial recruitment, charges study sponsors fees based on the number of potential participants who are screened through the telehealth platform.
“Right now, there are no clinical studies available for my grandson,” Nina says, “because there is still too little known about his disease. But people who are lucky enough to have a clinical trial available in their disease shouldn’t have to work so hard to find them and join them.”
About Know Rare
Know Rare is the trademark of Know Healthtech, Inc. and includes the Know Rare Clinical Study Finder Platform and Telehealth Pre-screener, as well as a Blog focused on investigational research, patient stories, as well as helpful tools and resources to help patients with rare diseases. The Know Rare blog and platform is available in several languages including French, Spanish, German, Italian and Norwegian. The Know Rare platform is HIPAA, CCPA, and GDPR compliant in its data collection and storage practices, and all data and sponsor dashboards are shared in aggregate.
Know Rare CEO: Nina Wachsman, founder of Augur Health, LLC., a strategy healthcare consultancy founded in 2006, after a career spent in leadership at international healthcare agencies under Interpublic Group and Grey International.
Co-Founder and COO, Jake Wachsman founded Black Diamond Labs in 2017 after a career start in digital media at Omnicom Media Group and Kirshenbaum & Bond.
Know Rare Board of Directors:
Nick Gurreri, is the Secretary of Know Healthtech, and formerly the VP, Global Commercial Operations at Alexion, where he spent 7 years focused on rare disease. He was previously the VP Managing Director of Alexion Australia/New Zealand, and VP, Director of New Product Development. He has a long career in pharma leadership in companies such as Pfizer, Pharmacia and BMS.
Gerald Mosely, is a PhD in experimental pathology, and the founder and President of CP&P Development, LLC, a specialty consulting firm focused on advising life sciences and healthcare commercial leaders and teams. He has worked as the acting Chief Commercial Officer at Arbor Vita Corporation in Fremont, California, and at Baxter Healthcare International and GlaxoSmithKline plc. Dr. Gerald Mosely’s work on tumor antigens, as well as susceptibility testing, has been published in the Journal of Immunology and Diagnostic Microbiology and Infectious Disease.