News

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…

Erector spinae plane (ESP) block can improve the safety of surgical procedures in patients with Ehlers-Danlos syndrome (EDS) and offer effective pain relief, according to a case report. The study evaluated pain perception in a patient after vascular ring repair surgery. The case report, “The erector spinae plane block…

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…

The Cherry Hill Education Association raised more than $10,000 for the non-profit organization Ehlers-Danlos Society through its 14th annual “Volley for Support” fundraising tournament that took place in October 2018. The Society’s global community includes patients, caregivers, healthcare professionals, and supporters, who work to improve the lives of…

Patients diagnosed with periodontal Ehlers-Danlos syndrome (EDS) may also have changes in the brain’s white matter, which makes up the tissue in the brain and spinal cord, a case series reports. Periodontal EDS is the rarest form of EDS, and is characterized by severe early-onset gum disease. The…

Generex Biotechnology will launch a wound care gel formulation called Excellagen, a potential treatment option for patients with Ehlers-Danlos syndrome (EDS) among others disorders. Excellagen is a highly-purified type 1 collagen-based, topical gel. According to Generex, its 3D dermal matrix favors wound healing. It activates platelets, leading to the…

Edsivo (celiprolol), being developed by Acer Therapeutics, is one step closer to approval for the treatment of vascular Ehlers-Danlos syndrome (vEDS), as the U.S. Food and Drug Administration (FDA) agreed to review the new drug application (NDA) for the therapy. The regulatory agency also granted priority…

Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures — at exactly the same time as the promise of new but expensive therapies to treat rare diseases has never been greater. That’s the paradox faced by pharmaceutical companies as well as patient advocacy groups in…

Approximately two in five children and adolescents with Ehlers-Danlos syndrome experience impaired breathing during sleep, a condition called obstructive sleep apnea (OSA), a study reports. The condition increases daytime sleepiness and sleep-related breathing disorders, which reduce the quality of life. The study, “Obstructive Sleep Apnoea in Children and Adolescents…

There is no scientific evidence supporting a clinical benefit of physical or mechanical therapies to treat lower limb problems in children with hypermobile Ehlers Danlos syndrome (hEDS), according to a pooled analysis of clinical trials. These findings highlight the need for more quality clinical studies geared specifically toward children…