March 3, 2021March 3, 2021 Ultomiris Found to Be Safe, Effective for Pregnancy-related aHUS Ultomiris (ravulizumab) can safely and effectively treat women with atypical hemolytic uremic syndrome (aHUS) whose symptoms are triggered by pregnancy, a Phase 3 clinical ... Read more
March 1, 2021March 1, 2021 Shoshin for aHUS Patients If you are living with a chronic disease such as atypical hemolytic uremic syndrome (aHUS), a concept called shoshin may help to change your ... Read more
February 26, 2021February 25, 2021 Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from ... Read more
February 24, 2021February 24, 2021 Ultomiris Safe and Effective for Children With aHUS, Phase 3 Trial Shows Ultomiris (ravulizumab-cwvz) is safe and effective in children with atypical hemolytic uremic syndrome (aHUS), data from a Phase 3 clinical trial show. These findings were in ... Read more
February 23, 2021February 23, 2021 Rare Disease Day at NIH, Set for March 1, Growing Year by Year Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, ... Read more
Health Insight About OneSource for aHUS Patients February 22, 2021February 22, 2021 If you have atypical hemolytic uremic syndrome (aHUS) and are being treated with Soliris ...
News, syndicated Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients February 17, 2021February 17, 2021 People with rare disorders have a worse healthcare experience than those affected by chronic ...
Health Insight Importance of Advocacy for aHUS February 15, 2021 Atypical hemolytic uremic syndrome (aHUS) is a rare disease that is sometimes hard to ...
News, syndicated Pandemic Won’t Stop Rare Disease Day on Feb. 28 February 10, 2021February 11, 2021 Scores of virtual events are afoot around the world to mark Rare Disease Day ...
Health Insight aHUS and Cancer February 9, 2021February 9, 2021 People with atypical hemolytic uremic syndrome (aHUS) usually have a genetic predisposition for disorders ...
News, syndicated NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns February 5, 2021February 6, 2021 While progress was made last year on newborn screening and other policy issues critical ...
aHUS Alliance Asking Patients Worldwide to Join Rare Disease Day Project February 3, 2021February 3, 2021 For Rare Disease Day on Feb. 28, aHUS Alliance Global Action is inviting people ...
Treatment Team of Specialists for aHUS February 1, 2021February 1, 2021 Atypical hemolytic uremic syndrome (aHUS) primarily affects the kidneys but it can also affect ...
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say January 28, 2021January 28, 2021
Pregnancy in aHUS No Longer Unadvised, But Still High-risk, Expert Says January 27, 2021January 27, 2021
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 ...
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum January 11, 2021January 11, 2021
aHUS Triggers January 11, 2021January 11, 2021 Atypical hemolytic uremic syndrome (aHUS), a chronic multi-organ disease that primarily affects kidney function, ...
Health Insight 5 Main Symptoms of aHUS December 21, 2020 In atypical hemolytic uremic syndrome (aHUS), an overactive immune system mistakenly attacks the lining ...
News AstraZeneca Set to Acquire Alexion Pharmaceuticals in 2021 December 16, 2020December 16, 2020 After unanimous votes by the boards of directors of both companies, AstraZeneca has announced ...
Health Insight How Does My Doctor Know I Have aHUS? December 15, 2020December 19, 2020 Since atypical hemolytic uremic syndrome (aHUS) is rare and has symptoms similar to those ...
News Specific aHUS Mutations Affect Relapse Risk After Soliris Discontinued, Data Show December 9, 2020December 9, 2020 The specific disease-causing mutations in a person with atypical hemolytic uremic syndrome (aHUS) affect ...
Health Insight aHUS and School December 7, 2020December 7, 2020 A rare chronic illness such as atypical hemolytic uremic syndrome (aHUS) can make going ...
News, syndicated NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting December 2, 2020December 1, 2020 To empower and equip members of the rare disease community to engage state leaders ...
FAQs FAQs About the aHUS Registry November 30, 2020November 30, 2020 You may be considering enrolling in the ongoing global atypical hemolytic uremic syndrome (aHUS) registry. ...
News, syndicated Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe November 26, 2020November 25, 2020 The first wave of COVID-19 in Europe severely disrupted access to care and raised stress ...
News Ultomiris as Shorter Infusion Approved in Europe to Treat aHUS November 25, 2020November 25, 2020 The European Commission has approved a new intravenous formulation of Ultomiris (ravulizumab) to treat for ...
