Published May 27, 2025 by NORD
By Laura O’Bara for Ehlers-Danlos Syndrome Awareness Month When you asked me to tell you how Ehlers-Danlos syndrome (EDS) type IV affected my daughter Kate’s life, I had to stop and think …
Continue reading “In Memory of Kate O’Bara: Raising Awareness for Vascular EDS”
Read morePublished May 15, 2025 by NORD
For MPS Awareness Day, May 15 By Debra Bell, mother of Eddie James Bell Jr. (July 29, 1981 – April 4, 2022) It’s hard to know where to begin when …
Continue reading “In Honor of Eddie — A Story of Courage, Love, and an Unbreakable Bond”
Read morePublished May 12, 2025 by NORD
By Alicia Truelove, MSN, RN, CV-BC, NPD-BC International Nurses Day, May 12, is a time to honor and celebrate the heart of healthcare: nurses. As a nurse of over 14 …
Read morePublished May 10, 2025 by NORD
By Christine McGarvey, NORD Rare Action Network Ambassador for Pennsylvania I have been on a long odyssey for over a decade in search of an ever-elusive diagnosis. In addition, I …
Continue reading “#UndiagnosedLife: An Ode to My Wingman on My Diagnostic Odyssey”
Read morePublished May 1, 2025 by NORD
Congress is currently considering potentially sweeping funding cuts to Medicaid, a program that provides life-saving health care coverage and services to those who need it most. What is at stake …
Continue reading “Rare Faces of Medicaid: What’s at Stake for the Rare Community?”
Read morePublished April 29, 2025 by NORD
“Having someone say, ‘This is your diagnosis. You are not crazy. It’s not in your head,’ would provide such relief, even if there is no cure.” ~ M, a mother …
Continue reading “Undiagnosed: A Mother and Son’s Journey”
Read morePublished April 17, 2025 by NORD
Chris Anselmo is a writer, coach, and advocate who is passionate about resilience and personal growth. Through his newsletter “Hello, Adversity,” he explores mindset shifts, overcoming challenges, and the realities …
Continue reading “Navigating Adversity Through Writing, an Interview with Chris Anselmo”
Read morePublished November 25, 2024 by NORD
On average, it can take five years – or more – for a rare disease to be correctly diagnosed. For Sharon Drennan and her son Rob, it took 15. “Rob …
Continue reading “A 15-Year Diagnostic Odyssey”
Read morePublished November 20, 2024 by NORD
If there is any message that Kate Kelly could share with her fellow rare disease caregivers, it’s this: You’re not alone. “There are moments when you get caught up in …
Continue reading “Rare Disease Caregivers: You’re Not Alone”
Read morePublished October 16, 2024 by NORD
By Curtis Mar The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World Anesthesia Day. …
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