Mary Chapman, features writer —

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…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

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…

As it does each September during Newborn Screening Awareness Month, Baby’s First Test is sharing information and stories that highlight efforts throughout the U.S. to bring attention to newborn testing. Baby’s First Test is a program of Expecting Health, an organization focused on pregnancy and newborn health. The…

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 —…

This year’s Cystic Fibrosis Foundation (CFF) Impact Grants, which provide up to $10,000 in funding, will support and empower the cystic fibrosis (CF) community through four new virtual programs focused on engaging and connecting patients. Now in its fifth year, the program helps individuals and organizations whose projects…

After raising more than $268,828 ($360,000 Canadian dollars) since 2017 for Cystic Fibrosis Canada, thyssenkrupp Elevator Canada received the nonprofit’s 2019 National Champion Award. The award recognizes companies, service groups, and other entities that have a presence in at least three regions of Canada and have provided exceptional…

While the COVID-19 outbreak has turned Cystic Fibrosis Foundation (CFF) activities into online events, Cystic Fibrosis Awareness Month continues to move forward, and with an emphasis on patient stories and education. Observed each May, the month is set aside to raise support and awareness for cystic fibrosis (CF), an…

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…