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News
News
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Reversibility of motor dysfunction in the rat model of NGLY1 deficiency
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The first person with NGLY1 deficiency (NGLY1-CDDG) was identified in 2012. Since then, more than 60 new patients have been diagnosed worldwide. NGLY1 deficiency is caused by mutations in NGLY1 gene, resulting in a broad spectrum of clinical features including developmental delay, seizure,..
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Rare Revolution Magazine Digital Spotlight: Professor Jaak Jaeken
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"In 1980 Professor Jaak Jaeken published the very first clinical description of PMM2-CDG, known as CDG-1a at that time. In this interview Professor Jaeken explains the complexity of CDG, discusses the first reported cases and his involvement in the discovery, as well as the challenges with..
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SRD5A3-CDG Report Release for World CDG Awareness Day!
In honour of World CDG Awareness Day and to celebrate our wonderful SRD5A3 community, we have developed an educational report on SRD5A3-CDG and the Cure SRD5A3 research program! This report is for everyone - patients and their families, caregivers, healthcare professionals, researchers and..
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Patient education webinars for CDG/NGLY1 Community
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CDG Care, in partnership with Putting Rare Diseases Patients First!®, a 501(c)(3) nonprofit charity, is featuring the first in a series of patient education webinars for the CDG/NGLY1 Community. It is designed for patients, parents, caregivers, and healthcare professionals. Click here for more..
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5th World Conference on CDG
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The 5th World Conference on CDG will be held from 14th to 16th May, 2021. The theme is "#StandUnited4CDG Patient Centric approach that drives CDG therapeutic development: Impossible, Is Possible!" The conference will see the presentation of the qualitative study led during the previous conference..
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Help create a CDG Mosaic
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The World CDG Organization is looking to create a CDG Mosaic honouring CDG adults and children. It is to remind everyone of being united in making a profound difference in the lives of people living with CDG. Click here for details on how you can contribute...
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FCDGC Study Reveals Liver Implications for Patients with CDG
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A natural history study by the Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) is uncovering new insights on liver function in patients with congenital disorders of glycosylation (CDG). A paper published recently in the Orphanet Journal of Rare Diseases based on findings from..
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FCDGC Guidance for Adult CDG Patients receiving the COVID-19 Vaccine
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The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) has released guidance for adult CDG patients receiving the Covid-19 vaccine. You can access it here or on the CDG Care website...
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World CDG organization is looking for researchers
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The World CDG Organization (WCDGO, www.worldcdg.org), the international patient-led CDG & Allies -PPAIN research network (www.researchcdg.com) and the Portuguese Association for CDG are happy to announce the opening of TWO NEW research projects: The development of a quality of life tool,..
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Bertrand Might’s life led to crucial medical discoveries
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“After years of research, it was the discovery of a double mutation in Bertrand’s NGLY1 gene, and the constellation of symptoms linked to it, that explained the cause of the illness and built a worldwide community around it.” Read more here:..