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…
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 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…
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they are thought to impact. Across countries, patients, caregivers and advocates will paint faces, wear…
The U.S. Food and Drug Administration (FDA) is updating its 2015 draft guidelines for drug discovery in rare diseases, with new guidance on natural history — how disorders such as spinal muscle atrophy (SMA) run their course if untreated — the choice of “efficacy endpoints” in clinical…
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