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Research Study: Impact of COVID-19 on People Living with Rare Diseases and Their Families

The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. We want to learn from you and hope that you are willing to share your experience. The Rare Diseases Clinical Research Network’s (RDCRN) Data Management and Coordinating Center, which is supported …

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Patient Focused Drug Development Meeting on Krabbe Disease

NORD invites you to register for an externally-led Patient-Focused Drug Development (EL- PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30 – 4:30 pm ET. Patients and caregivers impacted by Krabbe disease who are interested in potentially speaking at the meeting as panelists should be sure to fill out this form by August 7. If you …

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Life During the Covid-19 Crisis: A Chat with Dr. Bernard

by The Montreal Children’s Hospital Foundation Dr. Geneviève Bernard is a world-renowned expert on genetically determined white matter disorders, called leukodystrophies. Patients are referred to her clinic from all over the world. She brings much comfort to families everywhere who are suffering from these diseases for which the vast majority currently have no known cure. …

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