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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 t

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Rare Research Report: October 2023

October 17, 2023

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Establishing Evidence-based Guidelines for Diagnosis and Management of Liver Disease in Protoporphyrias

September 26, 2023

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Establishing Evidence-based Guidelines for Diagnosis and Management of Liver Disease in Protoporphyrias

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

Rare Research Report: September 2023

September 19, 2023

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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

Updating Guidelines for Clinical Management of Phelan–McDermid Syndrome

August 25, 2023

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Updating Guidelines for Clinical Management of Phelan–McDermid Syndrome

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

Rare Research Report: August 2023

August 14, 2023

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