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February 13, 2020February 13, 2020

Ehlers-Danlos Society Accepting Applications for Research Grants

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The Ehlers-Danlos Society is accepting applications for its spring 2020 research grant program. Grants will support research in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). Through its Spring ... Read more

February 10, 2020February 10, 2020

FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

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The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous ... Read more

February 6, 2020February 6, 2020

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

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The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over ... Read more

January 30, 2020January 30, 2020

Ehlers-Danlos Society Will Hold First European Learning Conference March 21-22

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To discuss the latest information about Ehlers-Danlos syndrome (EDS) and related disorders, patients and their families, scientists, and clinicians will convene in Paris from March 21-22 for the first ... Read more

January 23, 2020January 23, 2020

Overlap Symptoms of EDS and Osteogenesis Imperfecta May Be New EDS Type, Researchers Contend

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Patients with mutations in either the COL1A1 or COL1A2 genes, which provide instructions for making a specific collagen protein, may show symptoms of both Ehlers-Danlos syndrome (EDS) and osteogenesis imperfecta (brittle ... Read more

January 16, 2020January 16, 2020

Smaller Bone Size May Explain Greater Risk of Fractures in EDS Patients, Study Finds

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Women with hypermobile Ehlers-Danlos syndrome have a smaller cortical bone — the outer part of the bone, essential for its resistance and strength — and for that reason are ... Read more

January 2, 2020January 2, 2020

Prevalence of EDS and HSD in UK is Significantly Higher Than Previously Thought, Study Says

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The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be re-evaluated, as both conditions seem to be more prevalent than previously thought, a U.K. study ... Read more

December 19, 2019December 19, 2019

Atypical Headaches Can Be Initial Symptom of Vascular EDS, Case Report Suggests

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Atypical headaches on one side of the head, caused by tearing of the walls of the carotid artery — the artery that supplies oxygenated blood to the brain — ... Read more

December 12, 2019December 12, 2019

Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report

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A newly identified mutation in the TNXB gene, which leads to the loss of the Tenascin X protein, is associated with the development of classical-like Ehlers-Danlos syndromes (EDS), a ... Read more

December 10, 2019December 10, 2019

Gene Therapy Takes Center Stage at 2019 NORD Summit

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With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough ... Read more

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