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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

August 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 7, 2019August 7, 2019

Multidisciplinary Approach Needed to Evaluate Patients Suspected of Having aHUS, Case Report Says

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A multidisciplinary approach is needed to evaluate patients suspected of having atypical hemolytic uremic syndrome (aHUS) and to select the best course of treatment in each instance, a case ... Read more

August 2, 2019August 2, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

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Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

August 1, 2019

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

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Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state ... Read more

July 30, 2019July 30, 2019

Bloody Stools Link aHUS and Inflammatory Bowel Disease in 3 Boys Detailed in Case Study

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Bloody stools in children with atypical hemolytic uremic syndrome (aHUS) may indicate the simultaneous presence of inflammatory bowel disease (IBD), three case studies report. These findings raise questions about ... Read more

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