News

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Following a meeting with the U.S. Food and Drug Administration (FDA), Acer Therapeutics is planning to launch a potentially pivotal clinical trial to evaluate the safety and efficacy of its investigational therapy Edsivo (celiprolol). Edsivo was found in a small earlier trial to significantly reduce the rate of…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

People with Ehlers-Danlos syndrome (EDS) who undergo surgery to fix joint problems experience less pain when given opioid-free anesthesia and post-surgery pain management, a study reports. The study, “Opioid-free anesthesia for patients with joint hypermobility syndrome undergoing craneo-cervical fixation: a case-series study focused on anti-hyperalgesic approach,”…

A type of mutation not usually considered when screening possible cases of classical Ehlers–Danlos syndrome (EDS) was found to underlie the disease in a child whose parents did not carry the mutation. The findings call for a broadening of the portfolio of mutations in genetic testing, researchers said.

A man required close monitoring after developing suspected vascular Ehlers-Danlos syndrome (vEDS) associated with diffuse pulmonary ossification, a rare condition characterized by bone formation in the lungs, a case study reports. Although no disease-causing mutations were detected in genetic testing, the serious complications…

Scores of virtual events are on tap for global EDS and HSD Awareness Month, observed each May. The activities are focused on heightening awareness of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders, and the individuals they affect. Patients, caregivers, and advocates worldwide are invited to perform “acts of awareness,”  flood…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…