Rare Disease News

Guest Blog: Uniting for Behçet’s Disease Awareness on May 20

Published May 18, 2026 by NORD

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By Ashley Pelletier, Executive Director of the American Behcet’s Disease Association (ABDA) On May 20, Behçet’s Disease Awareness Day, and all month long, the American Behcet’s Disease Association (ABDA) is …

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Guest Blog: How Collaboration Drives Early Diagnosis and Better Outcomes During Infantile Spasms Awareness Week

Published December 1, 2025 by NORD

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In this NORD Guest Blog, two NORD Member patient organizations, TSC Alliance & Dup15q Alliance, discuss the importance of infantile spasms awareness, the symptoms to look out for, and how …

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Advait Wattal’s Journey to Make a Difference

Published August 4, 2025 by NORD

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Advait Wattal, a student advocate and NORD State Ambassador, shares how his commitment to public service sparked meaningful action in support of the rare disease community. His story shows the …

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Raising Awareness of GPP: Jimmy’s Story

Published July 28, 2025 by NORD

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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 …

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After Two Centuries, the Parry Romberg Syndrome Community Needs Answers

Published July 2, 2025 by NORD

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In this NORD Guest Blog, the founder of the Parry Romberg Foundation discusses the 1825-2025 history of PRS and what this moment means for hundreds of Americans with this life-altering …

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Guest Blog: The Power of Patient Advocacy in Drug Development

Published April 8, 2025 by NORD

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The FDA approval of the first treatment for Friedreich’s Ataxia (FA) on Rare Disease Day in 2023 marked a significant milestone for the estimated 5,000 people in the U.S. and …

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Rare Disease News

Guest Blog: Uniting for Behçet’s Disease Awareness on May 20

Guest Blog: How Collaboration Drives Early Diagnosis and Better Outcomes During Infantile Spasms Awareness Week

Advait Wattal’s Journey to Make a Difference

Raising Awareness of GPP: Jimmy’s Story

After Two Centuries, the Parry Romberg Syndrome Community Needs Answers

Guest Blog: The Power of Patient Advocacy in Drug Development

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