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Working together to improve the outcome for patients with rare, life-threatening, inherited disorders of the immune system.

 

 

Research Studies

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See opportunities to participate in research and help further innovations in care for patients like you.

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Learn About Newborn Screening

Infants with SCID who are transplanted before 3 months of age fare better than infants who are transplanted later in life. Learn more about newborn screenings for SCID and help improve outcomes for this rare disorder in the future.

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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.

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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.

Rare Disease Day at NIH. February 29, 2024. #RDDNIH.

Twenty Years of the Rare Diseases Clinical Research Network: Looking Back, Looking Ahead

The Rare Diseases Act of 2002 (H.R. 4013) enacted the establishment of the Rare Diseases Clinical Research Network (RDCRN) in 2003.

Keyword co-occurrence visualization map of RDCRN-supported publications 2004–2020.

PIDTC Updates

Newsletter of the Primary Immune Deficiency Treatment Consortium

Issue 17 | Winter

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