Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
The risks of death and rejection after heart transplant for people with advanced cardiac sarcoidosis were similar to those of patients who had transplants for other types of heart disease, according to an analysis of a transplant recipient registry. These findings suggest that a heart transplant is a safe…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
The Foundation for Sarcoidosis Research (FSR) has introduced a new online support group for those with chronic sarcoidosis. The peer-led group, created in response to patient feedback received last year, opens with a six-month schedule that began this month. Patients and caregivers can participate each month in one…
Poorer lung function and a higher body mass index (BMI), a measure indicating obesity, are significantly associated with a lower self-reported quality of life in people with sarcoidosis, a German study found. Of note, the tool used to assess quality of life — called the King’s Sarcoidosis Questionnaire or…
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…
In late 2012, Rhonda Underhill started having headaches and extreme fatigue. She attributed it to the long hours she was working as a general manager for a small business in Maryland. Rhonda Underhill (Courtesy of The Foundation for Sarcoidosis Research) After rounds of MRIs, misdiagnoses,…
Females with suspected cardiac sarcoidosis experience chest pain and palpitations more frequently than males, but their heart is affected less severely by the condition, a study suggests. Yet, the incidence of either death from all causes or significant ventricular arrhythmia — an abnormal rhythm in the heart’s lower chambers…
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