News

September 9, 2020September 9, 2020

60K More aHUS Patients Would Be Alive Worldwide if Given Appropriate Healthcare, Alliance Says

News

The aHUS Alliance Global Action estimates there could be 84,000 people living with atypical hemolytic uremic syndrome (aHUS) in the world today — roughly 60,000 more than current estimates ... Read more

September 2, 2020September 2, 2020

Soliris Safely Prevents aHUS Recurrence in Kidney Transplant Recipients, Study Finds

News

Soliris (eculizumab) is safe and effective for the prevention of recurrence in people with atypical hemolytic uremic syndrome (aHUS) who received kidney transplants, a 10-year follow-up study indicates. The ... Read more

August 27, 2020August 27, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 26, 2020August 26, 2020

aHUS Alliance Seeks Video Project Submissions to Mark Awareness Day

News

Leading up to atypical hemolytic uremic syndrome (aHUS) Awareness Day on Sept. 24, the aHUS Alliance is seeking participation from the global community for a new video project. As ... Read more

August 19, 2020August 19, 2020

aHUS Can Co-exist With Autoimmune Disorders, Impeding Diagnosis, Per Report

News

Atypical hemolytic uremic syndrome (aHUS) can co-exist with autoimmune disorders, complicating the diagnosis of the rare blood-clotting disease, a case report shows. The findings highlight the need for genetic ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 12, 2020August 12, 2020

aHUS Alliance Seeks Input from Ultomiris-treated Patients

News

To help persuade decision-making entities to make the atypical hemolytic uremic syndrome (aHUS) treatment Ultomiris (ravulizumab) available in countries with socially funded healthcare, aHUS Alliance Global Action is asking patients ... Read more

August 11, 2020August 11, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more

August 5, 2020August 5, 2020

aHUS Case Study Describes Intestinal Blood Clots After Kidney Transplant Rejection

News

The rejection of a kidney transplant was found to be the cause of intestinal bleeding and pain in a woman with atypical hemolytic uremic syndrome (aHUS) without systemic symptoms. ... Read more

July 29, 2020July 29, 2020

Mutations Affecting C3 Protein Activity Linked to aHUS in Case Report

News

Mutations leading to the overactivation of the complement regulator protein C3 should be recognized as a cause of atypical hemolytic uremic syndrome (aHUS), a case report highlights. The report, ... Read more

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