AFTD Director of Research Engagement Shana Dodge, PhD, attended the National Organization for Rare Disorders (NORD) Breakthrough Summit, held October 16 and 17 in Washington, D.C. NORD is an advocacy organization dedicated to individuals with rare diseases and is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. In the United States, a rare disease is one that affects fewer than 200,000, which includes FTD.

The Summit included presentations and conversations between people impacted by disorders, patient advocacy groups, academics, drug developers, and government representatives. A major theme in this year’s NORD Summit was the celebration of the 40th anniversary of the Orphan Drug Act (ODA). The enactment of ODA provides financial incentives for companies to produce drugs to treat rare diseases which otherwise may not attract biopharmaceutical companies due to the perceived limited number of potential eligible patients. The ODA has led to huge advancements in treating rare diseases, with many drug companies now working to find effective treatment for FTD.

Interested in learning more? Check out this blog post to learn about the ODA and the founding of NORD.