The 6th annual Plunge for Elodie is set to raise more than $2 million for epidermolysis bullosa (EB) research, EB Research Partnership (EBRP) has announced. The event, taking place from March 25 to April 2, invites supporters to plunge into freezing waters at one of the official…

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Actor Tom Holland of “Spiderman” fame is hosting a live virtual event, with celebrity appearances and performances, to raise money to benefit the EB Research Partnership, which funds research for a cure and aims to increase awareness of epidermolysis bullosa (EB), according to a press release. Eddie…

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

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…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. 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…

Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. Disorder: The Rare Disease Film Festival strives to eventually host a film about every one of the nearly 7,000 rare…

Struggling to cope with the death of his 13-month-old son due to epidermolysis bullosa (EB), Robb Freed spent much of the last decade in a cloud of turmoil, mostly drifting through life and making a few poor choices. Robb Freed will ride across the country and…

A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…

Hollywood celebrities Kaley Cuoco, Mandy Moore and Elizabeth Olsen have designed the latest Charity by Design collection by eco-conscious jewelry brand Alex and Ani to benefit the Epidermolysis Bullosa Medical Research Foundation (EBMRF). To support the epidermolysis bullosa (EB) community, Cuoco, Moore and Olsen were each responsible for the design…