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 conference will be July 11-14 in Houston. The meeting offers attendees an opportunity to learn more about…
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 of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…
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 syndrome (vEDS), the company announced. In the letter, the FDA requested additional data from “an adequate and well-controlled…
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, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…
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 lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…
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 stands for Extension for Community Healthcare Outcomes), the online educational and mentoring program called EDS ECHO…
The use of antihypertensive therapies — medications that lower high blood pressure — is not linked to a decrease in the frequency of clinical events associated with vascular Ehlers-Danlos Syndrome, data from a pilot study suggest. The findings were presented in a poster titled, “Pilot Study to…
The Ehlers-Danlos Society will award a total $275,000 in research grants to four projects seeking to advance knowledge of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and improve the quality of life of people with these connective tissue disorders. “This round of grant proposals featured some incredibly…
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…
The Ehlers-Danlos Society is offering several ways to get involved, spread awareness, and raise funds during Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month in May. Through a mix of individual and group challenges, plus tools and other resources, the society is challenging patients and advocates to join in helping…
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