November 26, 2020November 25, 2020 Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their ... Read more
November 25, 2020November 25, 2020 Ultomiris as Shorter Infusion Approved in Europe to Treat aHUS The European Commission has approved a new intravenous formulation of Ultomiris (ravulizumab) to treat for adults and children with atypical hemolytic uremic syndrome (aHUS) that ... Read more
November 23, 2020November 23, 2020 Brain Fog in aHUS While it’s not a classic symptom of atypical hemolytic uremic syndrome (aHUS), brain fog is fairly common among patients with kidney-related diseases. It can ... Read more
November 20, 2020November 18, 2020 Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 18, 2020November 18, 2020 Most aHUS Patients May Benefit From Dosing Interval Extension in Soliris Maintenance Treatment Extending the dosing interval of Soliris (eculizumab) maintenance treatment from standard two weeks to three weeks may equally achieve therapeutic blood levels in most ... Read more
News Ultomiris More Cost-effective Than Soliris for aHUS Patients in US, Study Finds November 11, 2020November 11, 2020 Ultomiris (ravulizumab) is expected to be more cost-effective than its predecessor Soliris (eculizumab) as ...
Health Insight Global aHUS Registry November 9, 2020November 10, 2020 If you have atypical hemolytic uremic syndrome (aHUS), you may want to consider enrolling ...
News, syndicated NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits November 6, 2020November 4, 2020 The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days ...
News Ultomiris Effective in Pediatric aHUS Previously Treated With Soliris, Study Suggests November 4, 2020November 4, 2020 Ultomiris (ravulizumab) is safe and results in stable kidney and blood measurements in children ...
Health Insight aHUS and Sleep Disorders November 2, 2020November 2, 2020 Patients with atypical hemolytic uremic syndrome (aHUS) may experience problems with sleep. Here are ...
News, syndicated UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner October 30, 2020November 4, 2020 A photo of a bespectacled young boy, his red baseball cap slightly askew as ...
Soliris Eases Fatigue, Other Common aHUS Symptoms, Real-world Data Show October 28, 2020October 28, 2020 Soliris (eculizumab) can meaningfully ease fatigue and other symptoms commonly reported by people with atypical ...
aHUS and Fatigue October 26, 2020October 26, 2020 People with atypical hemolytic uremic syndrome (aHUS) may experience fatigue — extended periods of ...
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say October 23, 2020October 23, 2020
Case Highlights Need to Identify More aHUS-causing Mutations October 7, 2020October 7, 2020 Research is needed to identify more mutations that cause atypical hemolytic uremic syndrome (aHUS), ...
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos October 6, 2020October 6, 2020
Signs of Depression in aHUS Caregivers September 28, 2020September 28, 2020 It can be exhausting and stressful to be the caregiver for someone who has ...
Higher-dose Ultomiris, Likely to Shorten Infusion Times, Favored for EU Approval September 23, 2020September 23, 2020
News Case Report Identifies Mutation in Non-complement Gene That Can Cause aHUS September 16, 2020September 16, 2020 Researchers have identified a novel mutation in the gene DGKE that can cause atypical ...
Health Insight The aHUS Tracker September 14, 2020September 14, 2020 If you have atypical hemolytic uremic syndrome (aHUS), you need to have regular blood ...
News 60K More aHUS Patients Would Be Alive Worldwide if Given Appropriate Healthcare, Alliance Says September 9, 2020September 9, 2020 The aHUS Alliance Global Action estimates there could be 84,000 people living with atypical ...
News Soliris Safely Prevents aHUS Recurrence in Kidney Transplant Recipients, Study Finds September 2, 2020September 2, 2020 Soliris (eculizumab) is safe and effective for the prevention of recurrence in people with ...
Health Insight Raising Awareness of aHUS August 31, 2020August 31, 2020 Raising awareness of rare chronic disorders such as atypical hemolytic uremic syndrome, or aHUS, ...
News, syndicated Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input August 27, 2020August 27, 2020 Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, ...
News aHUS Alliance Seeks Video Project Submissions to Mark Awareness Day August 26, 2020August 26, 2020 Leading up to atypical hemolytic uremic syndrome (aHUS) Awareness Day on Sept. 24, the ...
Health Insight Self-care Tips for aHUS Patients August 24, 2020August 24, 2020 For people with atypical hemolytic uremic syndrome (aHUS), self-care is important to help cope ...
News aHUS Can Co-exist With Autoimmune Disorders, Impeding Diagnosis, Per Report August 19, 2020August 19, 2020 Atypical hemolytic uremic syndrome (aHUS) can co-exist with autoimmune disorders, complicating the diagnosis of ...
