U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating  diagnoses, and improving patient care and treatment, is now in practice. This  framework, signed by all four countries take make up the U.K. — England, Scotland, Wales and Northern Ireland — builds on the success…
Pregnant women with Ehlers-Danlos syndrome (EDS) have a higher risk of experiencing a number of pregnancy and delivery complications, including premature births, placenta previa, and cervical insufficiency. than those without the disorders, a study reports. Given these findings, the researchers suggest that physicians should consider implementing…
In patients with Ehlers-Danlos syndrome (EDS), defects in the aortic carboxypeptidase-like protein (ACLP) — a protein that plays a key role in wound healing and tissue scarring (fibrosis) — lead to its retention inside cells, increasing cellular stress. According to researchers, these findings may be relevant for the development…
The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be re-evaluated, as both conditions seem to be more prevalent than previously thought, a U.K. study suggests. The study, “Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic…
The Ehlers-Danlos Society has received an anonymous gift of $1 million to advance research in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related medical conditions. The generous gift has enabled the Ehlers-Danlos Society, in collaboration with The International Consortium on EDS and HSD,…
Young people with hypermobile Ehlers-Danlos syndrome have a considerable number of physical symptoms that have a significant affect on their ability to participate in everyday activities and on their mental health, a study confirms. The findings of the study, “Symptom complaints and impact on functioning in youth with hypermobile…
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…
Get regular updates to your inbox.