Events

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

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 …

Continue reading "Webinar: State Legislative Session Recap"

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 …

Continue reading "Webinar: Overcoming Insurance Barriers"

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

*Win a 2026/ 2027 Membership to Salmon Falls Country Club Hollis, ME $100 minimum donation per chance 125 chances to win Donate June 11- July 9th Winner selected LIVE July 9th 8:00pm River Tap & Grill 52 Golf Course Lane, Hollis, ME Thank you, Salmon Falls Country Club/ River Tap & Grill for your generous …

Continue reading "Support Calley Forbes Fundraising for NORD Running for Rare!"

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 …

Continue reading "Webinar: Understanding Medical Nutrition and Insurance Coverage Challenges"

ED for EDS4 presents their 3rd Annual Golf Tournament to benefit the National Organization for Rare Disorders, hosted at the Heritage Country Club in Charlton, MA. Swing by after the tournament for dinner and a chance to win cash and prizes. Click here to enlarge the image.