Georgia RDAC Publishes Its 2024-2025 Annual Report: Building Momentum for Georgia’s Rare Disease Community
Georgia’s Rare Disease Advisory Council (RDAC) has released its inaugural Annual Report, covering activities from April 2024 through June 2025. Established by law on May 6, 2022, and fully seated in early 2024, the Council’s mission is to ensure every Georgian living with a rare disease has timely diagnosis, coordinated care, evidence-based resources, and access to effective treatments.
Key Highlights
- Operational Launch & Governance
- First official meeting in April 2024; Council now meets monthly and is guided by adopted bylaws, a mission statement, and three strategic goals.
- Diverse 2025 membership of clinicians, patient advocates, researchers, industry, and state-agency representatives brings cross-sector expertise to the table.
- Strategic Goals & Early Wins
- Policy Resource: Engaged state legislators and multiple agencies, delivered testimony, and supplied technical feedback on rare-disease legislation during the 2025 session.
- Empower the Rare Community: Drafted Georgia’s first Quality of Life Needs Assessment Survey (to launch in 2026) and attended community events such as Rare Wish and NORD’s conferences to elevate patient voices.
- Support the Medical Community: Provided guest lectures at Emory Medical School, the GA Bio Patient Engagement Summit, and other venues to raise clinical awareness of rare diseases.
- Outreach & Education
- Hosted nationally recognized speakers from NORD, PhRMA, and academic researchers to share best practices and policy insights with Council members.
- Launched a new RDAC website, improving public access to resources and Council updates.
- Metrics at a Glance
- 10 direct support requests from rare-disease patients or groups answered.
- 3 patient testimonials shared with policymakers.
- 2 community events attended and 3 listening-style presentations delivered.
- 2 bills supported or shaped through Council engagement.
Looking Ahead to 2026
The Council will broaden its impact by hosting statewide listening sessions, finalizing and deploying the Quality of Life Survey, expanding collaborations with healthcare providers, and solidifying its role as a trusted policy resource for Georgia’s General Assembly.
“United, we will help our rare community thrive for years to come.” — Beth Nguyen, RN, RDAC Chairperson
Read the full 2024-2025 Annual Report HERE to see detailed accomplishments, financials, and the complete roadmap for advancing rare-disease care and research in Georgia.
Protecting U.S. Leadership in Agricultural Biotechnology
Celebrating the Next Generation of Scientific Breakthroughs in Georgia
Investment in early-stage life sciences companies is critical to sustain America’s global leadership in discovering and developing new medical breakthroughs for patients, according to a recent General Catalyst blog, “ The Future of Life Sciences Investment .” Early-stage life sciences companies are unique for their ability to leverage specialized scientific knowledge and a nimble structure to pursue new, innovative approaches to treat a disease. However, these companies often rely on external investment, such as from venture capital (VC), to be able navigate the cost pressures and considerable risks associated with early-stage drug development. Life sciences mergers and acquisitions (M&A) represent a clear exit point for VC investors, attracting investment and allowing companies of all sizes to combine their complementary resources, skills and expertise to bring new medicines to patients. Amidst an increasingly challenging investment landscape, preserving M&A is critical to continue supporting the hundreds of pre-clinical companies working to bring new therapies to patients. Highlights from the blog are included below: “Over the past decade, the biopharmaceutical industry has quietly produced a steady drumbeat of significant medical advances…Despite these advances, there’s global pressure to innovate faster. While the U.S. has historically been the global leader in scientific research and development, it now faces increased international competition…” “For America to maintain its competitive advantage, it must continue investing in research and clinical development… We believe that venture capital can meaningfully contribute to fill this investment gap, providing support for America’s continued ability to innovate and advance global human health." “This isn’t just our belief — venture-backed companies are driving enhanced R&D productivity and efficiency. Recent data shows that roughly 65% of new medicines originated from outside of large pharmaceutical companies.” “We believe the most meaningful breakthroughs in life sciences are rarely achieved in isolation. They’re the result of deep, sustained collaboration — between scientists and clinicians, industry and academia, and increasingly, founders and investors.” As this blog highlights, life sciences M&A remains a critical pathway for fueling investment and supporting America’s role as a global leader in life sciences innovation. Policymakers must recognize the value of life science M&A and support enforcement policies that encourage these pro-competitive partnerships and the innovative medicines they bring to patients. About the Partnership for U.S. Life Science Ecosystem (PULSE) The U.S. life sciences ecosystem depends on mergers and acquisitions (M&A) as well as other collaborations to bring together the resources, investment and expertise needed to develop and deliver new treatments and cures for patients. PULSE is dedicated to raising awareness about the unique life sciences ecosystem and the importance of M&A in leveraging efficiency and experience across companies of all sizes. PULSE will help advance a national dialogue focused on fostering innovation across the life sciences while supporting a competitive U.S. market that advances next generation treatments and cures for patients. For more information, visit https://pulseforinnovation.org/.
