News

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…

A patient with vascular Ehlers-Danlos syndrome (vEDS) and a type of abnormal communication between blood vessels called carotid-cavernous fistula (CCF) was successfully treated via selective shunt occlusion, according to a case report. The study, “Selective Shunt Occlusion of Direct Carotid-Cavernous Fistula with Vascular Ehlers-Danlos Syndrome…

A multidisciplinary pain program, which includes medication and self-management strategies, helps patients with Ehlers-Danlos syndrome cope with chronic pain and improve their daily lives, two case reports show. The study, “Pain management in the Ehlers-Danlos syndromes,” was published in the American Journal…

Nearly half of patients with vascular Ehlers-Danlos syndrome experience gastrointestinal injuries, but men seem to carry an increased risk and severity than women, a 17-year retrospective study shows. The study, “Natural history of gastrointestinal manifestations in vascular Ehlers-Danlos syndrome: a 17-year retrospective review,” was published in the Journal…

Children with classical Ehlers-Danlos syndrome are more sensitive to diagnostic low-dose radiation that other children, leading to a higher rate of damage to their chromosomes, a study shows. The study, “Genome damage in children with classical Ehlers-Danlos syndrome – An in vivo and in vitro study,” was published in the…

Acer Therapeutics submitted a new drug application (NDA) seeking the approval of its investigative therapy Edsivo (celiprolol) for vascular Ehlers-Danlos syndrome (vEDS) to the U.S. Food and Drug Administration (FDA). Acer requested priority review and, if granted, the FDA will have 60 days to accept or reject the application.

With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate, or…

Clinicians highlighted the importance of regular screening for arterial diseases in patients with Ehlers-Danlos syndrome (EDS) in connection with Aortic Dissection Awareness Day last month. Arterial diseases — which affect blood vessels carrying blood from the heart to other organs — are known to occur in some of the rarest…