Latest News

Rare Research Report: November 2024

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.

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Finding Hope with a Rare Diagnosis: Q&A with NCATS Rare Diseases Are Not Rare! Challenge Winner Jacob Thompson

February 28, 2021

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Screenshot from Thompson’s video, “Keep on Fighting."

Gaining New Insights on Rare Diseases: Q&A with NCATS Rare Diseases Are Not Rare! Challenge Awardee Ramona Behshad

January 28, 2021

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Illustration of people holding hands appears above the text, Rare Diseases are Not Rare! #rarediseasechallenge @rarediseasechallenge

Connecting Rare Disease Patient and Research Communities: Q&A with NCATS Rare Diseases Are Not Rare! Challenge Awardee Rachael Baker

January 28, 2021

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Graphics promoting The Rare Majority Project

Exploring Oral Health-Related Quality of Life in Children with Osteogenesis Imperfecta

August 28, 2020

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Zoe Fang, an osteogenesis imperfecta (OI) patient, at an arcade

Stories of Patient Engagement in Rare Diseases Research

June 2, 2020

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Patients Power Research in Eosinophilic Gastrointestinal Disorders

February 24, 2020

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cegir-cured-group

Genetic Disorders of Mucociliary Clearance Consortium (GDMCC): Patient Advocacy Perspective

April 4, 2014

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