Webinar – Combating the fragmentation of data and disciplines: Innovation hubs to address rare diseases
This new free webinar, in partnership with AAAS/Science magazine, will be broadcast on May 26th (noon ET / 6pm CET) and will be available on demand on May 28th.
Or listen it as a podcast:
Data show that collaborative endeavors are more impactful in biomedical science than are solo operatives. This issue is particularly relevant to the rare disease research community because it is formed as a conglomerate of labs or centers—each with their own cluster of scientists, clinicians, and patients— studying different, uncommon diseases.
Although each rare disease may have only a few patients, there are many commonalities. Common needs include access to genetic testing, ethically regulated data access, psychological counseling, advocacy tools, and the need for fundraising to race for cures. Techniques, technologies, or treatments applicable to one disease might be transferable to others. Collaborative networks need to be fostered to meet the shared needs of the 350 million-plus patients affected.
Innovation hubs could provide a viable option to leverage common goals and opportunities, providing shared protocols for handling phenotypic, clinical, and genetic data, while also prioritizing and amplifying the voices of patients. They could bring together the best international policy structures to streamline efficient and effective medical and scientific advances in rare disease detection, diagnosis, and treatment. This webinar brings together key opinion leaders to discuss the current and future needs of patients, and how innovators, doctors, scientists, drugmakers, and policymakers can work efficiently together to deliver solutions to the millions of diagnosed and undiagnosed patients in need.
Marshall Summar, M.D. (Children’s National Hospital, Washington, DC)
Zizi Imatorbhebhe, M.B.A., M.S., P.M.P (ERGOMED PLC, Raleigh, NC)
Anna Lehman, M.D. (University of British Columbia and Vancouver General Hospital, Vancouver, Canada)
Vinodh Narayanan, M.D. (TGen, Phoenix, Arizona)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)