Today, advocate and patients are becoming drivers in the rare disease community, but it will be hard to make strides without coming together and working towards the same goal. Join us for this RARE Webinar to discuss how foundations can break down any barriers and work together to achieve foundation and rare disease goals. Gain advice and learn best practices from those who have already taken the first steps in cross foundation collaboration.
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Don’t forget, to access this webinar use the password: “Rare” with a capital “R”
Kelly Ranallo, Founder and President, Turner Syndrome Global Alliance (TSGA) and Founder, RareKC
Kelly Ranallo is the Founder and President of the Turner Syndrome Global Alliance (TSGA). Kelly has a teenage daughter who was diagnosed with Turner Syndrome (TS) in 2006 and was inspired to join the nonprofit world to advocate for girls, women and families with TS. In partnership with Children’s Mercy Kansas City through her position on the Family Advisory Board (FAB), Kelly set about building Turner Syndrome Clinic from within the hospital to address the unmet needs of families in and around the Midwest. The Great Heigh TS Clinic opened in 2010 and has since become a national model for providing comprehensive servces to girls and families living with TS.
As a globally recognized Rare Disease advocate, Kelly went on to co-found the RareKC Project in 2016. A city-wide effort to bring awareness and create solutions to the unique challenges faced by the Rare Disease community. As the recipient of the Global Genes Champion of Hope Advocacy Collaboration, RareKC has become a nationally recognized model of collaboration to advance care and medical innovation for the 7000+ identified rare diseases.
Kari Rosbeck, President and Chief Executive Officer, Tuberous Sclerosis Alliance
Kari Luther Rosbeck joined the TS Alliance in June 2001 and became President and CEO in November 2007. She has been involved in nonprofit fundraising and volunteer management for more than 25 years. During Kari’s tenure as President and CEO, the TS Alliance established a comprehensive research program fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. The “Unlock the Cure” research strategy focuses on key points along the drug discovery path: TS Alliance Grants Program promoting young investigators; Drug Screening by establishing a Preclinical Consortium; Clinical Research Consortium expediting implementation of future clinical trials and recruiting for clinical studies; biomarkers identification; and the TSC Natural History Database expansion including a Biosample Repository. “Unlock the Cure” also serves as a capital fundraising campaign, raising more than $10 million for TSC research since August 2011. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment. Kari previously served as Executive Vice President, overseeing the national volunteer outreach program (including development of over 30 volunteer branches) and was responsible for fund development (growing the annual budget by more than 50%).
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.
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