News

February 19, 2021February 19, 2021

High Prescription Rates Show GI Symptoms Are Common, Especially in Teens

News

Prescription claims for medications for gastrointestinal (GI) symptoms — among them heartburn, indigestion, constipation, and diarrhea — are higher among children and adults with Ehlers-Danlos syndrome (EDS) than in people ... Read more

February 18, 2021February 18, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

News, syndicated

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 12, 2021February 12, 2021

New AHEAD Coalition to Address Pediatric Concerns in EDS, HSD

News

The Ehlers-Danlos Society is pulling together a coalition aimed at addressing a broad range of pediatric concerns in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). Among its focus areas will ... Read more

February 10, 2021February 11, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

News, syndicated

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 5, 2021February 5, 2021

Celiprolol May Be Protective in COL3A1-positive Vascular EDS

News

The therapy celiprolol may have a protective effect in COL3A1-positive patients with vascular Ehlers-Danlos syndrome (vEDS), according to results of a long-term study. The data were published in the European ... Read more

February 4, 2021February 4, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

News, syndicated

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

January 29, 2021January 29, 2021

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

News, syndicated

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to ... Read more

January 22, 2021January 22, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for ... Read more

January 19, 2021January 19, 2021

Art Contest Salutes Creativity of Rare Disease Communities

News, syndicated

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare ... Read more

January 15, 2021January 15, 2021

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

News

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 ... Read more