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 […]
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. […]
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 […]
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 […]
