April 7, 2021April 7, 2021 Preventive Soliris Appears to Increase Kidney Transplant Success in aHUS Preventive or early treatment with Soliris (eculizumab) appears to increase the chances of a successful kidney transplant among people with atypical hemolytic uremic syndrome (aHUS), ... Read more
March 31, 2021March 30, 2021 Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds 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 ... Read more
March 31, 2021March 31, 2021 Rare Mutation Causing Adult-onset aHUS Provides Insights Into Disease The case of a man with atypical hemolytic uremic syndrome (aHUS) caused by a rare genetic mutation offers insights into the early diagnosis, disease mechanisms, ... Read more
March 24, 2021March 24, 2021 Diagnostic Process Using Genetic, Clinical Data May Aid in Identifying aHUS A diagnostic process combining genetic, clinical, and patient inquiry data may help in the identification and categorization of patients with suspected atypical hemolytic uremic syndrome ... Read more
March 17, 2021March 17, 2021 Soliris Effective for 2 Patients With Both aHUS and C3G Soliris (eculizumab) can effectively treat patients with both atypical hemolytic uremic syndrome (aHUS) and C3 glomerulopathy (C3G), two disorders that are known to impair kidney ... Read more
News Certain Patients Might Safely Stop Soliris With Monitoring, Study Suggests March 10, 2021March 10, 2021 Most people with atypical hemolytic uremic syndrome (aHUS) whose disease is in remission after treatment ...
News, syndicated Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day March 8, 2021March 7, 2021 Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is ...
Health Insight Talking to Your Employer About aHUS March 8, 2021March 8, 2021 If you have atypical hemolytic uremic syndrome (aHUS) and are working, you may want to ...
News Ultomiris Found to Be Safe, Effective for Pregnancy-related aHUS March 3, 2021March 3, 2021 Ultomiris (ravulizumab) can safely and effectively treat women with atypical hemolytic uremic syndrome (aHUS) whose ...
Health Insight Shoshin for aHUS Patients March 1, 2021March 1, 2021 If you are living with a chronic disease such as atypical hemolytic uremic syndrome (aHUS), ...
News, syndicated Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion February 26, 2021February 25, 2021 Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of ...
Ultomiris Safe and Effective for Children With aHUS, Phase 3 Trial Shows February 24, 2021February 24, 2021 Ultomiris (ravulizumab-cwvz) is safe and effective in children with atypical hemolytic uremic syndrome (aHUS), data from ...
Rare Disease Day at NIH, Set for March 1, Growing Year by Year February 23, 2021February 23, 2021 Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place ...
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients February 17, 2021February 17, 2021
aHUS and Cancer February 9, 2021February 9, 2021 People with atypical hemolytic uremic syndrome (aHUS) usually have a genetic predisposition for disorders of ...
aHUS Alliance Asking Patients Worldwide to Join Rare Disease Day Project February 3, 2021February 3, 2021
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say January 28, 2021January 28, 2021 The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide ...
Pregnancy in aHUS No Longer Unadvised, But Still High-risk, Expert Says January 27, 2021January 27, 2021
News, syndicated NORD’s Caregiver Respite Program Continues Through Pandemic January 22, 2021January 21, 2021 Caring for a loved one with a rare disease, especially during these uncertain times, demands ...
News aHUS Alliance Global Action Gears Up for a Busy Year January 20, 2021January 20, 2021 After a year in which COVID-19 was a disruptor, aHUS alliance Global Action is starting 2021 by ...
Health Insight Individualized Education Plan (IEP) for aHUS Patients January 18, 2021January 18, 2021 Atypical hemolytic uremic syndrome (aHUS) affects an estimated 1 in 500,000 people in the U.S. ...
News CD46 Mutation Not Enough to Trigger aHUS, Genetic Analysis Shows January 13, 2021January 13, 2021 A common mutation in the CD46 gene associated with atypical hemolytic uremic syndrome (aHUS) onset ...
News, syndicated NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum January 11, 2021January 11, 2021 The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences ...
Health Insight aHUS Triggers January 11, 2021January 11, 2021 Atypical hemolytic uremic syndrome (aHUS), a chronic multi-organ disease that primarily affects kidney function, may ...
News aHUS Relapse Triggered by COVID-19, Case Report Finds January 6, 2021January 6, 2021 The first reported instance of a COVID-19 infection triggering an atypical hemolytic uremic syndrome (aHUS) ...
Health Insight aHUS in Children January 4, 2021January 4, 2021 Atypical hemolytic uremic syndrome (aHUS) can occur during childhood and at any time thereafter. Here ...
Health Insight 5 Main Symptoms of aHUS December 21, 2020 In atypical hemolytic uremic syndrome (aHUS), an overactive immune system mistakenly attacks the lining of ...
