Advisory Council Meetings The Minnesota RDAC meets virtually, and you can find additional meeting information linked below. Meetings How to Make a Public Comments during Full Council Meetings The Minnesota Rare Disease Advisory Council values feedback from their community. They dedicate a public comment period during each quarterly full council meeting for members of the […]
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 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
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
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 […]
