News

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 medical records and data. The platform will be accessible from mobile devices and the internet; it will also be…

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 she had known for years that something was wrong, the news that David would battle a lifelong rare disease devastated…

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…