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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.

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Primary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies

March 25, 2024

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Primary Ciliary Dyskinesia Over Time: What We’re Learning from Natural History Studies

Severe Combined Immune Deficiency Over Time: What We’re Learning from Natural History Studies

December 12, 2023

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Severe Combined Immune Deficiency Over Time: What We’re Learning from Natural History Studies

Neonatal Enterovirus and Human Parechovirus Viral Sepsis Over Time: What We’re Learning from a Natural History Study

November 21, 2023

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Neonatal Enterovirus and Human Parechovirus Viral Sepsis Over Time: What We’re Learning from a Natural History Study

Urea Cycle Disorders Over Time: What We’re Learning from a Natural History Study

October 30, 2023

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Urea Cycle Disorders Over Time: What We’re Learning from a Natural History Study

Osteogenesis Imperfecta Over Time: What We’re Learning from a Natural History Study

September 22, 2023

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Osteogenesis Imperfecta Over Time: What We’re Learning from a Natural History Study

Cerebral Cavernous Malformations Over Time: What We’re Learning from a Natural History Study

August 25, 2023

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Cerebral Cavernous Malformations Over Time: What We’re Learning from a Natural History Study

Telehealth in Myasthenia Gravis: What We’re Learning from a Pilot Study

August 22, 2023

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Telehealth in Myasthenia Gravis: What We’re Learning from a Pilot Study

Congenital Disorders of Glycosylation Over Time: What We’re Learning from a Natural History Study

March 22, 2023

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Congenital Disorders of Glycosylation Over Time: What We’re Learning from a Natural History Study