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.
“Evolving FTC and DOJ policies leave investors and innovators navigating a cautious M&A landscape
Atlanta, GA — October 6 — Georgia Life Sciences today announced the launch of Vitals, a new podcast series developed in partnership with Cloudcast Media, a leader in branded podcast production. The series will spotlight the people, ideas, and innovations shaping the future of Georgia’s rapidly growing life sciences sector. Hosted by Georgia Life Sciences’ CEO, Maria Thacker Goethe, Vitals will feature in-depth conversations with scientists, entrepreneurs, investors, educators, policymakers, and patient advocates. Each episode will explore the challenges and opportunities facing Georgia’s life sciences ecosystem—spanning biopharma, medical technology, digital health, and advanced manufacturing. “Vitals gives us a powerful platform to showcase the remarkable work happening within our state,” said Maria Thacker Goethe. “By sharing these stories, we’re highlighting not only groundbreaking science but also the collaboration and talent that make Georgia such a vibrant hub for health innovation.” Cloudcast Media, known for its expertise in storytelling and high-quality podcast production, will bring industry insights and technical support to ensure the series reaches audiences across Georgia and beyond. “We’re proud to partner with Georgia Life Sciences on Vitals,” said Charles Parisi, Founder and CEO of Cloudcast. “This series will elevate the voices of innovators who are advancing science, improving patient outcomes, and building Georgia’s reputation as a global life sciences leader. We are very excited that Cloudcast Atlanta can play a role in supporting Maria and the impactful work of Georgia Life Sciences.” The first episode of Vitals launched today and is available on Apple Podcasts, Spotify, and other major streaming platforms, as well as through the Georgia Life Sciences website.
September 30, 2025 WASHINGTON, D.C. – John F. Crowley, President and CEO of the Biotechnology Innovation Organization (BIO) released the following statement on Most Favored Nation policies: "For too many years, Americans have subsidized the research and development necessary to bring newer and better medicines to patients around the world. As we saw with defense spending and NATO, the solution is not to weaken a strategically important American industry, but for other countries to pay their fair share. “Today’s announcement in the Oval Office highlights the problems with a drug delivery system where half of the cost of innovative medicines goes to middlemen and distributors, and where the supply chain distorts prices paid by the American people. We support a new framework that addresses the cost of medicines by simplifying the system - and making medicines directly available to patients. “But importing socialist price controls through most-favored nation policies fundamentally does not address the imbalance in international pricing for innovative medicines. MFN will not lower the out-of-pocket prices that most Americans pay for medicines. Even worse, it will jeopardize the entrepreneurial spirit and deter the capital necessary for a vibrant and essential American biotechnology industry to thrive and may cause most harm to small and midsize biotech companies, which are responsible for discovering more than half of all new treatments. “Without these biotech innovators and a free-market system, we risk slower scientific progress, decreased access to new medicines, compromised national security, fewer American jobs and perhaps most tragically, a diminished hope for those suffering with illness and disease. There are much better ways to address this problem than MFN.” ###
