Shana Dodge, PhD, AFTD’s Director of Research Engagement and Meghan Buzby, MBA, AFTD’s Director of Advocacy and Volunteer Engagement attended the National Organization for Rare Disorders (NORD) Breakthrough Summit, held October 20-22 in Washington, DC. 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. The theme for this year’s Summit was Equitable Access to Innovation, the idea that scientific advancements should benefit all people. Many sessions, including a conversation between Dr. Robert Califf, FDA Commissioner, and Dr. Meena Seshamani, Deputy Administrator and Director of the Center for Medicare, Centers for Medicare & Medicaid Services (CMS), focused on how to make medical innovations, such as cutting-edge gene therapy, more accessible and affordable for all.

Learn more about NORD by clicking the link below.

Nationella organisationen för sällsynta sjukdomar