Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research.
Rare Research Report: February 2023
Cerebral Cavernous Malformations Over Time: What We’re Learning from a Natural History Study
Cerebral cavernous malformations (CCMs) are abnormally enlarged spaces in the brain where blood collects near irregularly shaped, enlarged capillaries (tiny blood vessels) which have abnormally thin walls prone to leaking. Symptoms include headaches, seizures, paralysis, hearing or vision loss, and cerebral hemorrhaging (brain bleeds).
Join the RDCRN for Rare Disease Day at NIH on February 29, 2024
Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Thursday, February 29, 2024, from 9 am to 5 pm EST.
National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases and Their Families
The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.
Rare Research Report: April 2024
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research below.
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Rare Research Report: June 2024
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research below.
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Rare Research Report: July 2024
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research below.
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Rare Research Report: December 2024
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research below.
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Pre-Doc Preparatory Program (P³) in Translational Research
Do you have a rare disease research coordinator, genetic counseling assistant, or technician who may benefit from formal training in clinical and translational research?
$27M Grant Renews Cincinnati Children’s as Coordinating Center for the Rare Diseases Clinical Research Network
Cincinnati Children’s will continue as the RDCRN’s Data Management and Coordinating Center for another five years.