Published July 13, 2026 by NORD
By Kelly, Illinois When I was 12 years old, I started experiencing unexplained weight gain, fatigue, irregular sleep patterns, brain fog, and sudden bouts of rage that felt unlike me. …
Continue reading “Guest Blog: Trusting What I Knew About My Body”
Read morePublished June 18, 2026 by NORD
Ben Wilson Father of Gabe, who lives with Bloom syndrome Lead Global Ambassador for the Bloom Syndrome Association Fatherhood often brings pride and hope, but a rare disease diagnosis can …
Continue reading “Rare Dad, Rare Hero: Ben Wilson”
Read morePublished June 18, 2026 by NORD
D. Rolf Hill Father of three girls: Sam, Polly, and Rebecca Advocate for the Friedreich’s Ataxia Research Alliance (FARA) This Father’s Day, NORD recognizes the fathers whose strength, advocacy, and …
Continue reading “Rare Dad, Rare Hero: D. Rolf Hill”
Read morePublished May 22, 2026 by NORD
Congress is currently considering the Access to Genetic Counselor Services Act (H.R. 6280/S. 3607), a bipartisan piece of legislation that would recognize genetic counselors as Medicare providers, allowing them to …
Continue reading “Access to Answers — Bridging the Gap to Genetic Expertise”
Read morePublished May 8, 2026 by NORD
Rebecca Bialas, MD Mom to two children with PLGD-1 Co-founder and Chair, Plasminogen Deficiency Foundation This month, NORD is proud to spotlight a few incredible “Moms on a Mission” across …
Continue reading “Moms on a Mission: Rebecca Bialas, MD”
Read morePublished November 1, 2025 by NORD
Meet Annie – she’s passionate about the environment and is an accomplished marathon runner who has conquered the streets of New York City and is lacing up for the Chicago …
Continue reading “Racing for Answers: Annie’s Journey to Raise Awareness for Acromegaly”
Read morePublished September 30, 2025 by NORD
By Melinda Bachini of the Cholangiocarcinoma Foundation In April 2012, I walked into the National Cancer Institute (NCI) as Patient 3737. While not being called by my name may be …
Continue reading “From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials”
Read morePublished July 28, 2025 by NORD
In honor of Generalized Pustular Psoriasis (GPP) Awareness Day, coming up on Aug. 13, this NORD guest blog from the National Psoriasis Foundation details one man’s story to find a …
Continue reading “Raising Awareness of GPP: Jimmy’s Story”
Read morePublished 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”
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