Mary Chapman, features writer —

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

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…

Touted as the South’s largest fundraiser for epidermolysis bullosa (EB), the third annual Believe in Brady event is set for April 7 in Houston, Texas. Benefiting the EB Research Partnership (EBRP), the fundraiser will be at Levy Park Conservancy from 4 to 7 p.m. It will…

Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they are thought to impact. Across countries, patients, caregivers and advocates will paint faces, wear…

Despite broken bones and all manner of inclement weather, Robb Freed is seven months and 7,000 miles into his super-human quest to bike across the United States and back to raise awareness of epidermolysis bullosa (EB). His 13-month-old son died from the disease 10 years ago. Freed’s on the…

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…

Editor’s note: This is the second in a two-part series on epidermolysis bullosa. The first part, about the complications caregivers experience with the disease, can be found here. Despite the recent clinical-trial failure of SD-101, a once-promising skin cream, efforts are building to better understand epidermolysis bullosa (EB) and…