The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
The Foundation for Sarcoidosis Research (FSR) is launching a series of mindfulness and meditation workshops — all as free, live webinars — to support people with sarcoidosis and those caring for them. The workshop series will focus on discussing the physical and mental benefits of meditation and…
Corticosteroids, a type of anti-inflammatory medication, is the most-prescribed treatment for people with sarcoidosis, a study in a U.S. population shows. Also, the study found, a small percentage of these patients are receiving biological therapies (those using compounds derived from living organisms), despite not being approved in…
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is…
The World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) and the Foundation for Sarcoidosis Research (FSR) have recognized the University of Miami Sarcoidosis Program as a Sarcoidosis Center of Excellence. This recognition is granted to multidisciplinary teams of medical professionals, who share a specialized facility that…
Testicular sperm aspiration for in vitro fertilization (IVF) is a successful strategy to overcome infertility associated with methotrexate– and steroid-resistant testicular sarcoidosis, a case study shows. The report documents a case of a man who, within two years of a sarcoidosis diagnosis, showed complete azoospermia (absence…
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,”…
Relative to the general population, people with sarcoidosis are at higher long-term risk of heart failure and other heart problems, a large Danish data study suggests. Its researchers recommend regular monitoring of cardiac issues across this patient group. The study, “Long-Term Adverse Cardiac Outcomes in Patients With…
A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…
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