News

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 hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

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 Journal of Vascular & Endovascular Surgery, in the article “Celiprolol Treatment in Patients with Vascular Ehlers-Danlos Syndrome.”…

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 for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

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 patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…

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 Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

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 disease communities and salute the creativity of its members. Awardees will be able to display their art and…

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…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

The Ehlers-Danlos Society has several scholarship grants available for those who wish to attend its Virtual Summer Conference 2021, or the accompanying series of one-day meetings, and without aid may not be able to do so. The conference is set for June 26–27, and the five single-day events…

The Ehlers-Danlos Society is planning a series of virtual events that start in January and are intended to gather experts, people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), their families and caregivers. As inclusive events, organizations and the general public also are invited to join.