Updates

March 25, 2020March 25, 2020
Tekturna Seen to Treat High Blood Pressure Associated with aHUS

A medication for high blood pressure, Tekturna (aliskiren) may be used as an add-on therapy to manage hypertension associated with atypical hemolytic uremic syndrome (aHUS) until ... Read more
March 23, 2020March 23, 2020
aHUS Can Arise Following Aortic Dissection, Case Study Says

Atypical hemolytic-uremic syndrome can arise following an aortic dissection — a serious condition in which the inner layer of the aorta tears open — ... Read more
March 23, 2020March 23, 2020
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based ... Read more
March 16, 2020March 16, 2020
Bexsero Vaccine Against MenB Bacteria Only Effective in 50% of aHUS Patients, Study Finds

Bexsero, a vaccine developed as a treatment for serogroup B meningococci — the bacteria that can cause meningitis — is only effective in 50% ... Read more
March 9, 2020March 9, 2020
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly ... Read more

News

New aHUS-Causing Mutations Found in DGKE Gene in Chinese Patient, Report Says
March 9, 2020March 9, 2020
Scientists have discovered, in a Chinese patient, new mutations in the DGKE gene that ...
News

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
March 5, 2020March 5, 2020
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ...
News

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
March 2, 2020March 2, 2020
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review ...
Health Insight

How Does aHUS Differ from Other Thrombotic Microangiopathies?
February 27, 2020February 28, 2020
Thrombotic microangiopathy (TMA) refers to the formation of blood clots in the small blood vessels ...
News

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
February 26, 2020February 26, 2020
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders ...
News

Advances in Diagnosis, Disease Characterization Needed in Canada to Improve aHUS Outcomes, Registry Study Suggests
February 24, 2020February 24, 2020
Advancements in diagnosis and disease characterization are needed in Canada to improve the clinical ...

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Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
February 20, 2020March 3, 2020
An abundance of events are afoot around the world to mark Rare Disease Day ...
Patients Suspected of Having aHUS Should be Treated With Soliris Immediately, Case Study Suggests
February 17, 2020February 17, 2020
Patients who have symptoms that indicate severe atypical hemolytic uremic syndrome (aHUS) should be ...
FAQs About Kidney Transplants for Patients With aHUS
February 13, 2020February 14, 2020
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
February 10, 2020February 10, 2020
Understanding aHUS-linked Changes in Large Gene Cluster May Help in Diagnosis and Treatment, Review Says
February 10, 2020February 10, 2020
What to Keep in Mind During Plasma Exchange Therapy When You Have aHUS
February 6, 2020February 7, 2020

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
February 5, 2020February 5, 2020
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan ...
Two Missense CD46 Mutations May Lead to Pregnancy-associated aHUS, Case Report Suggests
February 3, 2020February 3, 2020
What to Keep in Mind About Soliris Therapy When You Have aHUS
January 30, 2020January 31, 2020
Experts Propose New Diagnostic Criteria to Distinguish TMA Associated With aHUS
January 27, 2020January 27, 2020

Signs of Depression in Patients with aHUS
January 23, 2020January 24, 2020
The potentially life-threatening symptom flares that sometimes result from the rare genetic disease atypical ...
Soliris Treatment Personalized to Reduce aHUS Patients’ Burden and Medical Costs, Case Study Reveals
January 22, 2020January 22, 2020
Difficulties in Diagnosing aHUS When Family History Lacking Detailed in Case Report
January 15, 2020January 15, 2020

Health Insight

Support Groups for Patients with aHUS
January 9, 2020January 10, 2020
Atypical hemolytic uremic syndrome (aHUS) is a rare, genetic disease in which blood clots ...
News

Pregnancy-associated aHUS Occurs Post-Partum, After Pregnancy Complication, and Is Successfully Treated with Soliris, Study Suggests
January 8, 2020January 8, 2020
Pregnancy-associated atypical hemolytic uremic syndrome (aHUS) usually occurs postpartum, after a pregnancy complication — ...
News

Alexion Adds More Complement System Targets to Dicerna’s RNAi-based Therapy Collaboration
December 18, 2019December 18, 2019
Alexion Pharmaceuticals now holds exclusive rights to Dicerna’s potential RNA interference (RNAi) therapies developed ...
News

Preventive Plasma Therapy Reduces Risk of Kidney Transplant Failure, Austrian Study Shows
December 11, 2019December 11, 2019
Plasma exchange (PEX) therapy given before and after kidney transplants reduces the risk of ...
News

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 6, 2019
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ...
Health Insight

Tips for Maintaining a Personal Health Record When You Have aHUS
December 6, 2019
Atypical hemolytic uremic syndrome (aHUS) is a rare genetic disease that results in the ...
News

Study Links ADAMTS13 Activity to Improved PEX Treatment Outcomes in aHUS Patients
December 4, 2019December 4, 2019
The activity of a molecule called ADAMTS13 can predict the outcome of patients with ...
News

New, Modified Blood Test May Help Identify Complement Dysregulation in aHUS, Other TMAs, Study Suggests
November 27, 2019November 27, 2019
A newly developed blood test is able to rapidly identify complement system dysregulation in ...
News

Sangamo Preparing to Launch UK Clinical Trial Testing TX200 Cell Therapy in End-stage Renal Disease
November 20, 2019November 20, 2019
Sangamo Therapeutics is preparing to launch a Phase 1/2 clinical study in the United ...

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