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.
Georgia Life Sciences has joined 43 state and regional life sciences organizations in signing a national Council of State Bioscience Associations (CSBA) letter calling on Congress to take immediate action on three bipartisan policy priorities that are essential to sustaining U.S. leadership in biomedical innovation and supporting patients nationwide. With Congress back in session and several critical programs at risk of expiring, the letter urges congressional leaders to advance the following provisions without delay: 1. Reauthorize the Rare Pediatric Disease Priority Review Voucher (PPRV) Program The PPRV program has been instrumental in incentivizing the development of therapies for children with rare and life-threatening conditions. Its lapse threatens to slow or halt research that families across the country are counting on. 2. Extend the SBIR/STTR Programs The Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) programs provide crucial early-stage capital for emerging biotech and medtech companies—many of them in Georgia. Without reauthorization, hundreds of innovative small businesses face uncertainty, jeopardizing new therapies, diagnostics, and technologies in the pipeline, 3. Advance PBM Transparency Reforms Greater transparency and accountability within pharmacy benefit manager (PBM) practices are needed to ensure that savings reach patients and employers. Reforming PBM operations is essential to strengthening access and affordability across the healthcare system. A Unified Message from the Life Sciences Community The sign-on letter reflects broad, bipartisan alignment across the national life sciences ecosystem: researchers, entrepreneurs, investors, patient advocates, and state associations all share a common message— these programs underpin America’s global competitiveness and are vital to patients who rely on continued scientific progress. Georgia Life Sciences has shared the letter with members of Georgia’s congressional delegation and will continue engaging with policymakers to emphasize the importance of swift action.
Georgia Life Sciences is proud to stand with patient advocates, providers, and employers across the state in urging Congress to take meaningful action on pharmacy benefit manager (PBM) reform. We recently signed on to a joint letter to Georgia’s Congressional Delegation stressing the urgent need for transparency, fair practices, and policies that ensure savings flow directly to patients.
Georgia Life Sciences’ CEO, Maria Thacker Goethe shares her perspective on the value of Georgia’s research universities in this month’s issue of Georgia Trend. “Georgia research institutions have felt a very significant impact from the federal rollbacks, specifically in NIH and NSF funding. Thacker Goethe’s message about the impact of research cuts is simple: Disruption shatters the foundational trust researchers have in grant continuity….” To read the full article, click here .
