Adult Cystinosis Webinar: Beyond the Kidneys Date: Thursday, August 6 Time: 4:00 PM CT Location: Zoom ☆ Topics of Discussion ☆ • Transitioning from pediatric to adult care • Gaps in adult cystinosis care • Psychosocial experiences and quality of life • Opportunities to improve long-term support and care
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
Come on out and support Maeve! Raffles and 15% of drink sales benefit NORD. RSVP 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 …
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Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …
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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 …
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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.
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 …
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