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 Info Session! Our July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there! Register Here
Commission Meetings The Illinois Rare Disease Commission meets monthly, and you can find additional meeting information below. Meetings
Advisory Council Meetings You can find the South Carolina RDAC meeting times linked below. Contact [email protected] for more info. Meetings
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
Advisory Council Meetings The Georgia RDAC meets virtually, and you can find their meeting times linked below. Meetings
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 […]
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
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 […]
Advisory Council Meetings The Massachusetts RDAC meets virtually, and you can find additional meeting information linked below. Meetings
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 […]
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 […]
