Medable Inc., the leading software provider for decentralized clinical trials, today announced it has joined the Global Genes® RARE Corporate Alliance to help expedite therapies for rare disease patients. The alliance is a coalition of more than 80 rare disease industry stakeholders committed to collaboration between industry and patient communities to improve access to effective therapies.
Members of the Global Genes alliance include pharmaceutical and biotech companies, industry and academia that support patient education, community building and improved access to approved rare disease treatments. Members have a shared patient focus, a community-centered approach and like-minded vision for the future.
“Rare disease is a critical area of focus in our efforts to get effective therapies to patients faster,” said Dr. Michelle Longmire, CEO and co-founder of Medable. “We’re thrilled to partner with Global Genes and like-minded industry and patient leaders to accelerate delivery of therapies for rare disease patients. This is a vital extension of our mission to reduce clinical trial timelines by 50 percent.”
“Collaboration is a vital component in the search for rare disease treatments and cures,” said Kimberly Haugstad, CEO, Global Genes. “Without partners like Medable working with our rare disease community, we would not be able to deliver on our mission to improve the lives of the more than 400 million rare disease patients and their caregivers worldwide. We look forward to collaborating with Medable to continue bringing meaningful change to the rare disease community.”
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Medable’s rare disease initiative also includes an alliance with the Castleman Disease Collaborative Network, founded by Dr. David Fajgenbaum, author of “Chasing My Cure: A Doctor’s Race to Turn Hope Into Action.” Medable hosted an exclusive event at this year’s JP Morgan conference to share Dr. Fajgenbaum’s inspiring story with biopharma industry leaders.
“Nearly 30 million Americans have one of 7,000 rare diseases — and 95 percent have no therapies on the market,” said Dr. Fajgenbaum. “Collaboration is critical to success in rare disease research, and we’ve learned the power of bringing together patients, physicians, and researchers to help accelerate treatment. We need creative solutions, including community development, drug repurposing, research alignment, and decentralized trials, to change the paradigm for rare disease research.”
Medable also last week announced the launch of its Patient Advisory Council, including rare disease patients and caregivers (among others) who will advise Medable and its biopharma customers on ways to improve patient access, experience, and outcomes in clinical trials.
“As the mother of three sons living with rare diseases, I know how important patient and caregiver insight can be in driving effective innovation and research,” said Jennifer McNary, chair of Medable’s PAC and founder of OneRare. “We’re focused on bringing the patient voice into clinical trials, so we can help create a better patient experience, increase engagement and address tougher-to-populate rare disease trials.”
Please join Medable and thousands of other health professionals, industry leaders and patient advocates to support Global Rare Disease Day this Saturday, February 29. Rare Disease Day is an annual awareness campaign dedicated to increasing public understanding of rare diseases and the impact on patients’ lives. Rare Disease Day (#RareDiseaseDay) was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008, and takes place every year on the last day of February.
Source: BioSpace
