- Rare Action Network®

Massachusetts Rare Disease Advisory Council (RDAC) Meeting
2026-09-17 09:00 - 11:00 UTC
Advisory Council Meetings
The Massachusetts RDAC meets virtually, and you can find additional meeting information linked below.
Meetings

Delaware Rare Disease Advisory Council (RDAC) Meeting
2026-09-15 11:00 - 12:00 UTC
Advisory Council Meetings
The Delaware Rare Disease Advisory Council meets online, and those meetings are open to the public. If you’d like to attend, please reference the Public Meeting Calendar for a schedule of upcoming meetings.
Public Meeting Calendar

Colorado Rare Disease Advisory Council (RDAC) Meeting
2026-09-14 09:00 - 11:00 UTC
You can find the Colorado RDAC meeting times linked below.
Meetings

Webinar: Recognizing Rare Cancer Day Through Action
2026-09-03 12:00 - 13:00 (America/New_York)
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 this webinar, we’ll discuss NORD’s state, federal, and regulatory efforts impacting the rare cancer community. We’ll also share how you can get involved and make an impact on Rare Cancer Day.
Register

South Carolina Rare Disease Advisory Council (RDAC) Meeting
2026-08-28 09:00 - 10:00 UTC
Advisory Council Meetings
You can find the South Carolina RDAC meeting times linked below. Contact SCRDAC@musc.edu for more info.
Meetings

NORD Volunteer Information Session
2026-08-27 16:00 - 17:00 UTC | Zoom Meeting, Online
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 your volunteer journey.
Register Here

Webinar: Innovative Approaches to Improving Your Rare Disease Care
2026-08-27 15:00 - 16:00 UTC
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

Georgia Rare Disease Advisory Council (RDAC) Meeting
2026-08-19 12:00 - 13:00 UTC
Advisory Council Meetings
The Georgia RDAC meets virtually, and you can find their meeting times linked below.
Meetings

Webinar: Understanding Medical Nutrition and Insurance Coverage Challenges
2026-08-19 01:00 - 14:00 UTC
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 rare disease community, and ways you can advocate for improved medical nutrition coverage in your state and at the federal level.
Register

Indiana Rare Disease Advisory Council (RDAC) Meeting
2026-08-14 15:00 - 17:00 UTC
Advisory Council Meetings
The Indiana RDAC hosts virtual meetings, and additional meeting information can be found below.
Meetings

Illinois Rare Disease Commission Meeting
2026-08-12 12:00 - 13:00 UTC
Commission Meetings
The Illinois Rare Disease Commission meets monthly, and you can find additional meeting information below.
Meetings

Maryland Rare Disease Advisory Council (RDAC) Meeting
2026-08-11 16:00 - 17:00 UTC
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

Students for Rare New Chapter Info Session - August
2026-08-10 12:00 - 13:00 UTC
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

Webinar: Overcoming Insurance Barriers
2026-07-30 15:00 - 16:00 (America/New_York)
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 won’t want to miss!
Register

Webinar: State Legislative Session Recap
2026-07-22 13:00 - 14:00 UTC
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 head towards 2027!
Register Here

Hoops for Hunter Syndrome
2026-07-19 09:00 - 12:00 UTC | Ranch Sports Facility, 16067 Euclid Ave, Chino, CA, 91708, United States
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 determination to create a brighter future for those living with Hunter syndrome.
What you can expect:

Basketball Tournament
Family-Friendly Fun
Support a Meaningful Cause
Make a Difference for Rare Disease Families

Register Here

Students for Rare New Chapter Info Session - July
2026-07-07 18:00 - 19:00 UTC
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

Webinar: Effective Lawmaker Engagement for Rare Disease Advocates
2026-06-17 13:00 - 14:00 UTC
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 you how to build and nourish relationships with your state lawmakers. We’ll also discuss strategies for engaging members of Congress ahead of the 2026 midterm elections when lawmakers are often spending more time in their home districts and seeking opportunities to connect with constituents.
Register Here

New Hampshire Rare Disease Advisory Council (RDAC) Meeting
2026-06-05 10:00 - 11:00 UTC | New Hamp Place, NH, United States
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 using the Microsoft Teams Meeting Link.
For information about attending a meeting, including confirmation the location, please contract Bureau of Family Health and Nutrition, 603-271-4517
You can find the published New Hampshire RDAC meeting times linked below.
Meetings

Minnesota Rare Disease Advisory Council (RDAC) Meeting
2026-06-04 09:00 - 16:30 UTC
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 public who wish to address the council. If you would like to provide comment, they ask that you contact them prior to the full council meeting date so that they can provide space. If you have a particular topic you would like to comment on please provide that information to them and your contact information at info@mnraredisease.org.
In order to ensure that they can accommodate everyone who may wish to speak, speaking time is limited to 3 minutes per person.

Tennessee Rare Disease Advisory Council (RDAC) Meeting
2026-03-25 08:00 - 09:30 UTC
The Tennessee RDAC meetings are scheduled on the fourth Wednesday of every other month from 8:00 am to 9:30 am CST. If you are interested in joining the meeting, please email info@tnrdac.org for instructions on how to attend and a link to the virtual meeting.
Meetings
