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Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

Successful kidney transplant for atypical hemolytic uremic syndrome (aHUS) is aided by treatment with Soliris (eculizumab), a small Turkish study has found. The study “Renal Transplantation in Patients With Atypical Hemolytic Uremic Syndrome: A Single Center Experience” was published in the journal Transplantation Proceedings. Hemolytic uremic syndrome (HUS) is…

Activities are set internationally to observe the Sept. 24 aHUS Awareness Day, which aims to raise visibility around the disease, highlight the latest research, and provide insight into patients’ needs. The fifth annual awareness day is coordinated by aHUS Alliance, an international umbrella group of patient organizations…

Soliris (eculizumab) treatment shows a long-term positive benefit-risk profile in both adult and pediatric patients with atypical hemolytic uremic syndrome (aHUS), a registry study reports. The study, “Eculizumab Safety: 5-Year Experience from the Global aHUS Registry,” was published in the journal Kidney International Reports. Soliris, an engineered…

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such issues during a recent talk at the New York Genome Center. Minssen directs the Center for Advanced Studies in…