For many rare disease patients, medical nutrition products are life-sustaining medicine, yet insurance coverage for medical nutrition is inconsistent and varies widely based on a patient's diagnosis, insurance plan type, and state of residence. During this webinar, we'll teach you about the meaning of "medically necessary nutrition products", how medical nutrition coverage challenges impact the […]
In an era of scientific and technological advances, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey. Register
Rare Cancer Day is an annual celebration devoted to raising awareness about rare cancers and the challenges people living with them face. This year, Rare Cancer Day is being recognized on September 23. For the rare cancer community, timely access to innovative diagnostic and comprehensive care can mean the difference between life and death. During […]
Advisory Council Meetings The Michigan Rare Disease Advisory Council meets quarterly and meetings are open to the public. Please email [email protected] for more information. You can find the upcoming meeting times linked below. Meetings
Join the Branford Lions Club for Rare Eye Diseases: Awareness, Advocacy & Action, an educational program focused on rare diseases of the eye and their impact on individuals and families. Presented in collaboration with Quinnipiac University’s Netter School of Medicine and Center for Interprofessional Healthcare Education and The Denise D’Ascenzo Foundation, the event will explore […]
Navigating a rare or undiagnosed condition can feel overwhelming, from preparing for medical appointments and communicating with providers to finding reliable information, resources, and support. Join us for a practical conversation designed to help patients and families feel more confident, informed, and prepared throughout their journey. Hear from Christine McGarvey, an undiagnosed patient and NORD’s […]
Advisory Council Meetings The Georgia RDAC meets virtually, and you can find their meeting times linked below. Meetings
Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar, we’ll teach you how RDACs operate, and the different ways that advocates can advance and strengthen the work of a council. […]
Advisory Council Meetings The Indiana RDAC hosts virtual meetings, and additional meeting information can be found below. Meetings
In this session, NORD staff will provide an overview of NORD's volunteer programming. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion, providing a space for you to ask questions and determine the next steps for […]
Make a difference and join NORD’s Running for Rare Cheer Squad at the 2026 TCS New York City Marathon! Join NORD’s Running for Rare Cheer Squad and help bring energy, encouragement, and support to runners along the course. Your presence will help motivate NORD’s team and show the rare disease community that they are surrounded […]
You can find the Colorado RDAC meeting times linked below. Meetings
