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October 16, 2019October 16, 2019

Clinical Deterioration Should Not Dictate Soliris Withdrawal, Report Suggests

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Treatment of atypical hemolytic uremic syndrome (aHUS) with Soliris (eculizumab) should be maintained even after clinical deterioration, a case report suggests. This is the first report of suboptimal response to ... Read more

October 9, 2019October 9, 2019

Soliris Treatment Resolved aHUS in 2 Patients with Inflammatory Bowel Disease, Study Reports

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Treatment with Soliris (eculizumab) led to successful resolution of atypical hemolytic uremic syndrome (aHUS) that was triggered by inflammatory bowel disease (IBD), a study of two cases has found. The ... Read more

October 2, 2019October 2, 2019

Soliris Treatment for aHUS May Not Increase Risk for Miscarriages, Small Study Suggests

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Treatment with Soliris (eculizumab) in pregnant women with atypical hemolytic uremic syndrome (aHUS) may not increase the risk of miscarriage, according to the analysis of a small group of patients enrolled in the Global aHUS ... Read more

September 27, 2019September 27, 2019

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

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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 ... Read more

September 25, 2019September 25, 2019

aHUS Linked to Similar Disorder via Complement System and Protein Deficiency, Study Says

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Two diseases often difficult for doctors to distinguish between — atypical hemolytic uremic syndrome (aHUS) and thrombotic thrombocytopenic purpura (TTP) — are both marked by complement system activation and severe ... Read more

September 11, 2019September 11, 2019

Treatment with Soliris May Help aHUS Patients Who Undergo Kidney Transplant, Study Suggests

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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: ... Read more

September 4, 2019September 4, 2019

aHUS Alliance Gearing Up for Sept. 24 aHUS Awareness Day

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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’ ... Read more

August 28, 2019August 28, 2019

Soliris Treatment is Safe in aHUS Patients, Registry Study Reports

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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 ... Read more

August 28, 2019August 28, 2019

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

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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 ... Read more

August 21, 2019August 21, 2019

Soliris Withdrawal After Full Recovery in aHUS Patients Is Safe, Study Indicates

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Soliris (eculizumab) withdrawal after several months of treatment and full recovery in people with atypical hemolytic uremic syndrome (aHUS) is both safe and cost effective, a study suggests. The study, “Atypical haemolytic ... Read more

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