Join us for THRIVE! Driving RDAC Success
on Tuesday, April 11th!
Continue down the page to learn more about our speakers and the agenda for the day!
Click anywhere on the graphic to register or use the link below.
Founder & President of RDII
Associate Chair of the North Carolina RDAC
Tara is the President and Founder of Rare Disease Innovations Institute, RDII. RDII is a global non-profit focused on educating, engaging, and equipping the rare disease community to achieve a higher quality of life, accelerating diagnosis, and enabling access and treatment through policy. Through this non-profit and her rare disease network, RDII works across the US to help states create successful rare disease ecosystems in their state by guiding them to create successful councils and state rare disease networks. Guidance is state tailored to its unique rare disease population. RDII also partners with rare disease advocacy groups, academia, foundations, healthcare systems, state, and federal government, and industry to build disease-specific models to support targeted disease populations in order to mitigate the challenges associated with accessing diagnostics & treatment and disease management. Tara also currently serves as Associate Chair of the North Carolina Rare Disease Advisory Council and Network, the first rare disease advisory council in the U.S.
Chair of Ohio RDAC
Randi is a fierce advocate for patients and families with rare disorders. Her only child Colton, now 21, was born with severe hemophilia and then diagnosed with leukemia at 15 months old. Randi lives in Northeast Ohio with her husband Matt, Colton, and their three dogs. She is the Rare Disease Policy Director for Little Hercules Foundation and State Policy Director for the Ohio Bleeding Disorders Council. Randi became an advocate for affordable access to healthcare for medically fragile children by leading the parent advisory councils at both Akron Children’s Hospital and Ohio’s Title V Program – Children with Medical Handicaps – through the Department of Health and helped develop an annual Statehouse Day in 2008 for the hemophilia community. She took her passion of working on policy to public office, serving as State Representative for the 75th House District during the 133rd General Assembly. While there she passed bills to establish a Rare Disease Advisory Council and protect vulnerable patients in Ohio utilizing the 340B federal drug discount program. Randi is driven by a passion to train and engage patients and caregivers to advocate for better access to affordable treatment.
Chair of the Minnesota RDAC
Amy Gaviglio is a certified genetic counselor and founder of Connetics Consulting, which provides public health genetics, genomics, and rare disease services across the country and has been working in the newborn screening and rare disease space for the past 15 years. Amy currently works with the Centers for Disease Control and Prevention’s Newborn Screening and Molecular Biology Branch, the Association of Public Health Laboratories (APHL), Expecting Health, and several other genetics and rare disease organizations. She is co-chair of APHL’s New Disorders in Newborn Screening workgroup and is a member of additional national groups including the Legal & Legislative Issues in Newborn Screening workgroups, the Rare Disease Diversity Coalition, and EveryLife Foundation’s Community Congress. She also serves as an Advisor for the Midwest Genetics Network and the Innovations in Newborn Screening Interoperability Center. Finally, Amy serves as Chair of the NBS Expert Panel for the Clinical and Laboratory Standards Institute and is currently the Chair of Minnesota’s Rare Disease Advisory Council.
Vice Chair of the Nevada RDAC
Georgene’ Glass is the founder and Executive Director of Dreamsickle Kids Foundation, Inc, the first Sickle Cell Disease (SCD) organization in the state of Nevada. Georgene’ also serves as a Vice Chair of the Nevada Rare Disease Advisory Council the 11th RDAC established in 2019. As a mother of a child with SCD, Georgene’ has made increasing SCD awareness and support in the state of Nevada a personal mission. With SCD being one of the 10,000 and counting Rare Diseases, in 2020 Dreamsickle Kids Foundation expanded its support and efforts to those in the state that may suffer from any rare disease. Georgene’ has Certification in Healthcare Leadership and is a Community Health Worker (CHW) with a special emphasis on SCD. Georgene’s goal in leading Dreamsickle Kids is to provide support to patients like her daughter, Gia, and caregivers like her, and to make long-term impactful changes to address the health disparities experienced by people with rare diseases.
Co-Founder of NW Rare Disease Coalition
Joshua Henderson’s expertise is in building relationships and fostering collaboration across diverse groups of stakeholders, with a specific focus on supporting underrepresented populations and advancing the development of treatments for underserved diseases. He is currently the Head of Rare Diseases at Pulse Infoframe, responsible for partnering with patient advocacy groups and biopharma companies globally to streamline fit-for-purpose, regulatory-grade real-world data. He is also a co-founder of the NW Rare Disease Coalition, the founder of StageNext Fund, investing in seasoned women entrepreneurs, and a Venture Partner & Healthcare Due Diligence Committee at NextGen Venture Partners. Previously, Joshua was the Vice President of Springboard Enterprises, a non-profit venture catalyst, where over 12 years he established its annual life science and health technology programs and led the efforts to recruit, select, and advise nearly 400 women-led healthcare and technology companies in the Springboard portfolio.
Founder & Director of Alabama Rare
Advisor to the Alabama RDAC
Swapna Kakani is a nationally known speaker, an award-winning advocate, a public health researcher, and a consultant in rare and chronic disease healthcare delivery and the patient experience. Her own life story of being diagnosed with the rare disease short bowel syndrome, at birth, and becoming a strong advocate, shows her individual resilience and self-determination in the face of constant difficulties. Swapna has lived with nutrition through an IV and/or a feeding tube her entire life and received a small intestine organ transplant as a young adult. In 2017, after learning through her own medical experiences, the fact where you live matters in access to quality care and resources, she founded Alabama Rare, a grassroots coalition to unite the state around the rare disease population for the purpose of advocacy and education. The coalition has initiated an annual patient/caregiver symposium and policy advocacy days at the state house. Alabama Rare in addition helped pass the state’s rare disease advisory council bill in 2017 and continues to serve as an advisor.
Board of Directors Member of Utah RDAC
Matthew Pearl is 26, an individual with Fanconi Anemia and a patient advocate. He serves in various capacities on several Nonprofits including: the Fanconi Anemia Research Fund (FARF); the Rare Action Network (RAN); the National Organization for Rare Disorders and the National Ability Center. He is on both the Utah Rare Disease Advisory Council (RDAC) and The Professional Ski Instructors of America – American Association of Snowboard Instructors Intermountain Board of Directors. Matthew obtained a B.S. degree from Westminster College, MO with a major in Leadership Consulting in Organizations and minors in Social and Personality Psychology and Nonprofit Management. Matthew attended the Dana Farber Cancer Institute at Harvard as the first patient with FA to research FA.