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…
News
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…
aTyr Pharma has announced that its investigational immunomodulatory therapy for pulmonary sarcoidosis will now be called efzofitimod instead of ATYR1923. The change comes after the United States Adopted Names (USAN) Council and the World Health Organization’s (WHO) International Nonproprietary Name (INN) expert committee selected efzofitimod as the generic name…
The U.S. Food and Drug Administration has granted orphan drug designation to aTyr Pharma’s experimental immunomodulatory molecule ATYR1923 for the treatment of sarcoidosis. The therapy is being developed for severe inflammatory diseases affecting the lungs, which in sarcoidosis patients is called pulmonary sarcoidosis. Orphan drug status is given to…
INOpulse, a device that administers inhaled nitric oxide, significantly improved blood flow parameters in a small proof-of-concept clinical trial conducted in people with pulmonary hypertension associated with sarcoidosis (PH-Sarc). “We are pleased with the positive top-line data from this proof-of-concept study,” Naseem Amin, MD, chairman of the board…
A recent episode of TV’s “Behind the Mystery” shared the journey of a sarcoidosis patient from diagnosis to treatment as a way to raise awareness of the emotional and medical challenges of living with this complex condition. The episode, shown on Lifetime on Dec. 6 and again Dec. 14,…
People with autoimmune diseases such as sarcoidosis are not at higher risk of worse outcomes following lung or heart-lung transplants compared with people without such diseases, a new single-center study shows. The findings that autoimmune patients fare as well as others following such transplants refute the long standard approach…
A $600,000 grant will help the Foundation for Sarcoidosis Research, known as FSR, advance investigations into this rare disease and address health disparities seen among African Americans with sarcoidosis. The three-year grant is part of the Chan Zuckerberg Initiative’s Rare as One Project. “The Foundation for Sarcoidosis…
A Phase 2 clinical trial is recruiting adults with chronic pulmonary sarcoidosis to investigate the safety and therapeutic potential of CMK389 in improving lung function. CMK389 is an investigational therapy, developed by Novartis, for the treatment of pulmonary sarcoidosis and atopic dermatitis. It was designed to inhibit interleukin 18,…
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