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Resources

Below is a list of resources that we have curated to support our OTCD community, including newly diagnosed patients, as well as families who have been managing the condition for some time. 

Research Publications

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Helpful Links

OTCD Variant Patient Registry

OTCD – Children’s National Medical Center

National Urea Cycle Disorders Foundation

Global Genes

CANPKU+

Connecting Families UCD Foundation

National Organization for Rare Disorders (NORD) 

Once Upon A Gene Podcast

Rare Awareness Radio

Facebook Group – OTC Deficiency

Facebook Group – UCD in Common

Facebook Group – UCDs in Canada

Inform Rare

Metabolic Support UK

Think Ammonia! Campaign

Rare Village Foundation 

Clinical Trials

Urea Cycle Disorders Consortium Research Studies

Clinical Trials Website

WCG CenterWatch

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