News

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

“A correct diagnosis of [classical Ehlers-Danlos syndrome or] cEDS is not always straightforward,” researchers in Belgium concluded in a new study, in which the scientists urged that anyone suspected of having this type of the rare connective tissue disorder undergo a complete clinical examination, followed by genetic testing. Such testing…

The Ehlers-Danlos Society is set to host an online event Sept. 25–26 spotlighting neurological complications in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders. The initiative is part of the group’s EDS ECHO Summit Series, held for the first time last year as a virtual scientific conference for…

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

Kerry Gabrielson, a 34-year-old with Ehlers-Danlos syndrome (EDS), is devoting herself to raising awareness about hypermobile diseases and helping people with these disorders learn how to manage their symptoms through her podcast “Hypermobility Happy Hour.” In the 34 episodes aired to date, Gabrielson has interviewed experts on topics…

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…

Weekly rehabilitation sessions mixing mild exercise with cognitive training for pain management may help in relieving lower back pain in people with hypermobile Ehlers–Danlos syndrome (hEDS), a pilot study suggested. Its researchers call for new approaches in rehabilitation, like neurocognitive rehab sessions, that focus on a patient’s perception of…

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

Doctors should consider the possibility of vascular Ehlers–Danlos syndrome (EDS) when seeing a patient with recurrent pneumothorax — the presence of air in the space between the lungs and the chest wall — that’s resistant to conventional therapy, according to a case report. The report described a 19-year-old man…