Advisory Council Meetings The Council holds public meetings on the first Friday of each month from January through June, from 10:00 a.m. to 11:00 a.m. Meetings typically take place at 29 Hazen Drive, Concord, New Hampshire; however, the meeting location is subject to change. An online attendance option is also available and may be accessed […]
Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be one of the most valuable opportunities to establish meaningful, lasting relationships with elected officials and their staff. During this webinar, we’ll teach […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
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 […]
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. […]
