Together We Are Mighty: Attending the 2025 NORD Breakthrough Summit
By: Meagan Hutchinson
This week, I had the privilege of attending the 2025 NORD Rare Diseases and Orphan Products Breakthrough Summit in Washington, D.C., hosted by the National Organization for Rare Disorders (NORD).
A rare disease is defined as a condition that affects fewer than 200,000 people in the United States. Phelan-McDermid syndrome, a rare genetic disorder, is one of the 10,000+ rare diseases that have been identified so far. NORD is a leading voice in this space, working to improve the lives of people with rare diseases through education, advocacy, research, and support services. NORD’s motto is, “Alone we are rare. Together we are strong.” Phelan-McDermid Syndrome Foundation is proud to be one of more than 350 patient advocacy organizations that are members of NORD’s network.
One of the most valuable parts of the event was learning about the resources available to families through NORD. One exciting tool is their free online Data Literacy course. This course is designed to help families make informed healthcare decisions, advocate more effectively, and get involved in research that can lead to better treatments and care. NORD also offers the RareCare Patient Assistance Program, which helps individuals living with rare diseases access medications, afford insurance premiums and co-pays, get support with diagnostic testing and travel for medical care or clinical trials, and find emergency help and caregiver relief when needed.
It was truly inspiring to be part of a community so committed to making life better for people affected by rare diseases. I am excited to bring what I learned back to our own community and continue supporting families through resources, connections, and advocacy.
Resources: