Shoot Hoops. Raise Hope. Change Lives. Join Project Alive on July 19 for Hoops for Hunter Syndrome, a fun-filled basketball event benefiting Project Alive and the Hunter syndrome community! Date: July 19, 2026 Time: 9:00 AM – 12:00 PM Location: Ranch Sports Facility This special event was inspired by a family's love for basketball and their […]
As state legislative sessions wind down, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar, we’ll discuss bills we tracked across the country, celebrate our hard-fought advocacy wins, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we […]
If you are impacted by a rare disease, you are likely spending countless hours navigating health insurance. In this session, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you […]
Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our August session will take place on August 10 at 12:00 p.m. ET. We look forward to seeing you there! Register Here
Advisory Council Meetings The Maryland Rare Disease Advisory Council meets monthly on the second Tuesday of the month from 4-5PM. You can find additional meeting time information linked below. Meetings
Commission Meetings The Illinois Rare Disease Commission meets monthly, and you can find additional meeting information below. Meetings
Advisory Council Meetings The Indiana RDAC hosts virtual meetings, and additional meeting information can be found below. Meetings
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 […]
Advisory Council Meetings The Georgia RDAC meets virtually, and you can find their meeting times linked below. Meetings
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
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 […]
Advisory Council Meetings You can find the South Carolina RDAC meeting times linked below. Contact [email protected] for more info. Meetings
