Mary Chapman, features writer —

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 —…

To help people experiencing the lingering effects of coronavirus infection, the Pulmonary Wellness Foundation (PWF) has launched a free online rehabilitation and recovery program called COVID Bootcamp 101. In addition to patient education and support, the program offers breathing and other exercises conducted by a team of…

Former New York Yankees center fielder and Latin Grammy nominee Bernie Williams is helping to raise awareness of idiopathic pulmonary fibrosis (IPF), the disease took his father’s life, as part of Boehringer Ingelheim’s national Breathless Ballad Challenge. The campaign aims to educate and empower people who have, or suspect…

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…

People with pulmonary fibrosis (PF) and other chronic lung disorders should strictly limit social contact during the global spread of the respiratory illness COVID-19, a pulmonary expert said. Rahat Hussain, MD, a pulmonologist and assistant professor of internal medicine at the University of Texas (UT) Health Science Center…

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…

Although 50,000 new cases of pulmonary fibrosis (PF) are diagnosed each year, a national survey found that 86 percent of U.S. residents are unfamiliar with the disease’s symptoms. The online National Awareness Survey from the Pulmonary Fibrosis Foundation (PFF), was completed by 2,013 U.S. adults, and…

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…

Veteran entertainer and Tony Award winner Bernadette Peters will headline the 10th annual “Broadway Belts for PFF!” event to raise funds to fight pulmonary fibrosis (PF). Set for Feb. 24 in New York City, the star-studded evening of music, comedy, and performance is the single-largest fundraiser for…