More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…
News
A woman developed cold agglutinin disease (CAD) and myositis (muscle inflammation) as a complication of COVID-19, underscoring the importance of a timely, comprehensive evaluation to identify rare complications of SARS-CoV-2 infection. Researchers noted that the patient’s…
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
Sanofi’s investigational therapy sutimlimab safely and rapidly prevents red blood cell destruction (hemolysis), increases hemoglobin levels, and reduces fatigue in adults with primary cold agglutinin disease (CAD), according to full data from Part A of the Phase 3 CARDINAL study. These therapeutic benefits were associated with a fast and…
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…
Daratumumab eased circulatory symptoms and anemia without causing adverse side effects in a 59-year-old man with cold agglutinin disease (CAD), a recent medical case study reported. The antibody-based medication, normally used to treat myeloma, may offer an alternative to CAD patients who fail to respond to other therapies,…
The case of a man with COVID-19 who temporarily developed elevated levels of cold agglutinins — the self-reactive antibodies that cause cold agglutinin disease (CAD) — was described in a recent report. According to researchers, this is the third known case of elevated cold agglutinin levels documented in…
Physicians should be aware that patients with autoimmune hemolytic anemia (AIHA) are at greater risk of experiencing thrombotic events — blood vessel obstruction driven by blood clots — to better manage their condition, a case report highlighted. The case study, “Autoimmune Hemolytic…
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
An examination of medical records of Indian children with autoimmune hemolytic anemia (AIHA), a group of disorders that includes cold agglutinin disease, found managing infants and those with secondary AIHA challenging, with almost one-third of patients needing treatment…
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