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.
One of the biggest benefits of becoming a Georgia Life Sciences Student Member is access to discounted registration for Georgia's premier life sciences conference—bringing together CEOs, researchers, entrepreneurs, investors, and innovators from across the state. Better yet, Student Membership is only $25 per year , making it one of the best investments you can make in your future. The Georgia Life Sciences Emerging Leaders Network (ELN) is the official student membership community of Georgia Life Sciences, created to connect students, postdoctoral researchers, and early-career professionals with Georgia's thriving life sciences ecosystem. As an ELN member, you'll build meaningful peer-to-peer relationships, engage with industry leaders, explore career opportunities, and gain access to professional development programs designed to help you launch a successful career in the life sciences. As a member, you'll have opportunities to: Connect with fellow students, postdocs, and emerging professionals from across Georgia. Expand your network through peer-to-peer engagement and professional networking events. Learn from industry leaders and gain exposure to Georgia's life sciences ecosystem. Participate in workforce and career development programming. Access Career Connections Student members also receive exclusive access to the Georgia Life Sciences Career Connections LinkedIn Group , where you can: Discover internships and job opportunities. Connect with employers, recruiters, and industry professionals. Stay informed about career fairs, networking events, and workforce initiatives. Engage with a growing community of future life sciences leaders. Student Member Benefits Georgia Life Sciences Student Membership: $25/year Georgia Life Sciences Summit Registration: $150 Access to the Emerging Leaders Network Career Connections LinkedIn Group Networking events and professional development opportunities Industry news, workforce resources, and member communications Whether you're exploring careers in biotechnology, medical devices, pharmaceuticals, diagnostics, digital health, or research, Georgia Life Sciences connects you to the people and opportunities that can help shape your future. Join today . Build your network. Advance your career.
From breakthrough therapeutics to next-generation medical technologies, tomorrow's innovators take the stage at the Georgia Life Sciences Summit. Sponsored by Johnson & Johnson, the Startup Showcase will highlight eight of Georgia's most promising early-stage life sciences companies as they present their innovations during the Summit Luncheon on August 26. These emerging companies are tackling some of healthcare's biggest challenges across therapeutics, diagnostics, AI, and medical technology, while demonstrating the depth of innovation taking place throughout Georgia's life sciences ecosystem. Meet the 2026 Startup Showcase Companies: Abundance Biopharma Corporation Athna Biotech Atomistic Insights NovAb Nytricx Oridivus TremeBio YoungHeartValve Following the presentations, each company will participate in a live investor Q&A featuring an exceptional panel of venture leaders: Emily Dinu, Numinous Capital John Gutierrez, Ascenta Capital Dr. Emma Heckenberg, Solas BioVentures Patrick Jordan, NovaQuest Capital Management Tim Opler, Stifel Whether you're an investor looking for the next breakthrough, a corporate leader seeking innovative partners, or simply interested in the future of life sciences, the Startup Showcase offers a front-row seat to the companies poised to shape what's next. Join us August 25–26 at the Georgia Life Sciences Summit and discover the next generation of innovators driving Georgia's life sciences economy.
July 24, 2026, Atlanta, GA - Georgia Life Sciences applauds Congressman Rich McCormick (R-GA) for introducing the Biotechnology Diplomacy Leadership Act , legislation designed to strengthen America's leadership in biotechnology by establishing a senior biotechnology leadership position within the U.S. Department of State. As biotechnology continues to drive breakthroughs in healthcare, agriculture, advanced manufacturing, and national security, the United States must remain a global leader in innovation while strengthening strategic partnerships with allies around the world. The proposed legislation recognizes biotechnology as a critical component of U.S. economic competitiveness and foreign policy and would help ensure that the federal government is well positioned to advance these priorities internationally. The legislation also reflects recommendations from the National Security Commission on Emerging Biotechnology , which called for a more coordinated national approach to advancing biotechnology and protecting U.S. leadership in this strategically important sector. "Georgia is home to one of the nation's fastest-growing life sciences ecosystems, and policies that strengthen America's global biotechnology leadership directly benefit innovators, researchers, manufacturers, and patients," said Maria Thacker Goethe, President & CEO of Georgia Life Sciences. "We appreciate Congressman McCormick's leadership in recognizing biotechnology as both an economic engine and a strategic national priority." Georgia Life Sciences looks forward to working with policymakers at both the federal and state levels to advance policies that foster innovation, strengthen the U.S. bioeconomy, and ensure America remains the global leader in biotechnology.
