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July 18, 2019July 18, 2019

European Initiative Targets Diagnosis, Treatment of Rare Diseases

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A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of ... Read more

July 17, 2019July 17, 2019

While Restructuring, Acer Continues Development of Edsivo for vEDS

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Acer Therapeutics announced that although it is going through a restructuring process, it stays committed to advancing the development of Edsivo (celiprolol), a potential treatment for vascular Ehlers-Danlos syndrome ... Read more

July 10, 2019July 10, 2019

Ehlers-Danlos Society and Backpack Health Create Digital Platform to Help Patients Manage Their Medical Records

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The Ehlers-Danlos Society and Backpack Health have announced a partnership to provide patients with Ehlers-Danlos syndrome (EDS) and other related rare diseases with a digital management platform to better access their ... Read more

July 5, 2019July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

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It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

July 3, 2019July 3, 2019

Marfan Foundation’s Annual Conference to Include vEDS Syndrome

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For the first time, The Marfan Foundation’s annual conference will include topics concerning vascular Ehlers-Danlos syndrome (vEDS), a Marfan syndrome-related condition. In association with Texas Children’s Hospital, the foundation’s 35th ... Read more

June 26, 2019June 25, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials ... Read more

June 26, 2019July 3, 2019

FDA Rejects New Drug Application for Edsivo, Says Additional Trial Is Needed

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Acer Therapeutics has received a complete response letter from the U.S. Food and Drug Administration (FDA) regarding its New Drug Application for Edsivo (celiprolol) for treatment of vascular Ehlers-Danlos ... Read more

June 21, 2019June 21, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, ... Read more

June 19, 2019June 19, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

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People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most ... Read more

June 12, 2019June 12, 2019

Ehlers-Danlos Society Launches Project ECHO Initiative Aimed at Patient Care Worldwide

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The Ehlers-Danlos Society has launched an initiative to support healthcare professionals worldwide to care for patients with Ehlers-Danlos syndromes (EDS) and other hypermobility spectrum disorders (HSD). Part of Project ECHO (ECHO ... Read more

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