National Organization for Rare Disorders (NORD)

ALT A festive poster with colorful holiday lights framing the top. A cartoon zebra wearing an orange hat and scarf waves cheerfully. Text reads: "Brighten a rare disease family's holiday! Support NORD's 4th Annual Holiday Care Package Project." Two photos are shown: one with people dressed in holiday attire outdoors, and another with a group holding packages inside. The NORD logo is at the bottom right.

ALT The image shows the Wisconsin State Capitol building under a partly cloudy sky. Text overlay states: "November 9, 2026 | 4PM CT Wisconsin Rare Action Coalition Information Meeting." Logos for NORD, Rare Action Network, and Rare WI are at the bottom, alongside a "Register" prompt.

ALT The image shows a historic building with a dome and flags in front, featuring a statue of a rider on horseback in the foreground. Text on the image reads: "November 9, 2026 | 4:30PM MT. Montana Rare Action Coalition Information Meeting. Register." Logos for NORD, Rare Action Network, and Rare MT are at the bottom.

ALT A person is reading a piece of paper in an office setting. The image features a banner for the Clinician Education Program and highlights "Bridging Gaps Across the NF1-PN Care Continuum." It mentions the availability of on-demand content and includes logos for medlive, NORD (National Organization for Rare Disorders), and the Children's Tumor Foundation.

ALT A cityscape of Nashville with the logo of the American Society of Gene and Cell Therapy. Text announces "Breakthroughs in Cell + Gene Therapy" taking place on November 12-13, 2026, in Nashville, TN and online.

ALT Quote: “Access to care for the rare disease community has long been NORD’s priority. It is particularly important that eligible people do not lose coverage through implementation inconsistent with the intent of the law.” Attribution: Kathryn Lowell, Executive Vice President, Policy and Government Affairs, NORD.

ALT Map of 25 plaintiff states and D.C. that brought the case in front of Federal Court. Click link to read list of states.

ALT NORD President and CEO Pam Gavin addresses FDA Rare Disease Framework Initiative Public Meeting, October 28, 2026. Photo from event.

ALT Director of the FDA Center for Drug Evaluation and Research Dr. Mike Davis (center right), NORD Executive Vice President of Government Affairs Kathryn Lowell (center left), Vice President of Federal and Global Public Policy Mike Beard (right), and Policy Analyst Sarah Royka (left).

ALT The image is a bar graph showing the comparison between federal Medicaid spending reductions in rural areas and the rural health fund. The left bar indicates a reduction of approximately $137 billion in federal Medicaid spending, and the right bar shows a $50 billion rural health fund. Text notes that states' awards range from less than $100 per rural resident to more than $500. The image is attributed to KFF.

ALT Quote from Hilary Gee Goeckner of the American Cancer Society Cancer Action Network at the 2026 NORD Breakthrough Summit: "Biomarker testing is the key that unlocks access to precision medicine: better understanding of your diagnosis, your prognosis, and what treatments are available. And unfortunately, we see a lot of the same disparities that we see across the healthcare system in access to biomarker testing."

ALT FDA Regulatory Roundtable at the NORD Breakthrough Summit 2026. From left to right, head of the Rare Disease Innovation Hub Amy Comstock Rick (moderator); Michael Davis, MD, PhD, Director, CDER; Michelle E. Tarver, MD, PhD, Director, CDRH; Karim Mikhail, B.Pharm, MSc, Director, CBER.

ALT Rare Impact Award 2026 honoree Mark W. Skinner, JD. Lifetime Achievement Award for advancing bleeding disorders advocacy at the state, national, and international levels, championing patient-centered outcomes research, and serving as an advisor for NORD and other organizations.