Updates

December 11, 2019December 11, 2019
Preventive Plasma Therapy Reduces Risk of Kidney Transplant Failure, Austrian Study Shows

Plasma exchange (PEX) therapy given before and after kidney transplants reduces the risk of disease relapse and transplant failure in people with atypical hemolytic ... Read more
December 6, 2019
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access ... Read more
December 6, 2019
Tips for Maintaining a Personal Health Record When You Have aHUS

Atypical hemolytic uremic syndrome (aHUS) is a rare genetic disease that results in the formation of blood clots in the small blood vessels of ... Read more
December 4, 2019December 4, 2019
Study Links ADAMTS13 Activity to Improved PEX Treatment Outcomes in aHUS Patients

The activity of a molecule called ADAMTS13 can predict the outcome of patients with with atypical hemolytic uremic syndrome (aHUS) and their response to ... Read more
November 27, 2019November 27, 2019
New, Modified Blood Test May Help Identify Complement Dysregulation in aHUS, Other TMAs, Study Suggests

A newly developed blood test is able to rapidly identify complement system dysregulation in people with conditions related to thrombotic microangiopathies (TMAs) — including ... Read more

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 ...
News

Rare Disease Film Festival Highlights Patient and Researcher Unity
November 13, 2019
Rare disease-themed videos glowed on a large screen before an audience of people in ...
Health Insight

aHUS and Diet: What Should I Eat and What Should I Avoid?
November 8, 2019
Atypical hemolytic uremic syndrome (aHUS) is a rare disease in which blood clots are ...
News

Severe Hypertension Common in aHUS Patients and Soliris Effective at Treating Them, Study Finds
November 5, 2019November 5, 2019
Severe and life-threatening hypertension is common in people with atypical hemolytic uremic syndrome (aHUS), and ...
News

Rare Eye Manifestations Linked to aHUS, Study Reports
October 29, 2019October 29, 2019
A rare case of a 20-year-old male with atypical hemolytic uremic syndrome (aHUS) showing ...
Health Insight

How Might aHUS Affect My Life Expectancy?
October 25, 2019October 25, 2019
Atypical hemolytic uremic syndrome (aHUS) is an extremely rare disease that is characterized by ...

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FDA Approves Alexion’s Ultomiris for Treating aHUS in Children and Adults
October 23, 2019October 23, 2019
The U.S. Food and Drug Administration (FDA) has approved Ultomiris (ravulizumab-cwvz) for the treatment ...
Tips for Managing Stress When You Have aHUS
October 21, 2019
The symptoms of atypical hemolytic uremic syndrome (aHUS) — ranging from fatigue, nausea and ...
Clinical Deterioration Should Not Dictate Soliris Withdrawal, Report Suggests
October 16, 2019October 16, 2019
Protecting Your Kidneys When You Have aHUS
October 11, 2019
Soliris Treatment Resolved aHUS in 2 Patients with Inflammatory Bowel Disease, Study Reports
October 9, 2019October 9, 2019
Tips for Taking Care of aHUS Caregivers
October 4, 2019

Soliris Treatment for aHUS May Not Increase Risk for Miscarriages, Small Study Suggests
October 2, 2019October 2, 2019
Treatment with Soliris (eculizumab) in pregnant women with atypical hemolytic uremic syndrome (aHUS) may not increase the risk of ...
Making the Most of Your Doctor’s Visit When You Have aHUS
September 27, 2019
NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019September 27, 2019
aHUS Linked to Similar Disorder via Complement System and Protein Deficiency, Study Says
September 25, 2019September 25, 2019

Tips for aHUS Caregivers
September 20, 2019
Caring for someone with atypical hemolytic uremic syndrome (aHUS) can be a stressful. Here ...
What Different Blood Test Results Mean in aHUS
September 13, 2019
Treatment with Soliris May Help aHUS Patients Who Undergo Kidney Transplant, Study Suggests
September 11, 2019September 11, 2019

Health Insight

Coping with aHUS
September 9, 2019
Atypical hemolytic uremic syndrome (aHUS) is a rare, progressive disease that results from tiny ...
News

aHUS Alliance Gearing Up for Sept. 24 aHUS Awareness Day
September 4, 2019September 4, 2019
Activities are set internationally to observe the Sept. 24 aHUS Awareness Day, which aims ...
Health Insight

FAQs About aHUS
August 29, 2019November 5, 2019
Information about rare diseases such as atypical hemolytic uremic syndrome (aHUS) can be difficult ...
News

Soliris Treatment is Safe in aHUS Patients, Registry Study Reports
August 28, 2019August 28, 2019
Soliris (eculizumab) treatment shows a long-term positive benefit-risk profile in both adult and pediatric patients ...
News

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing
August 28, 2019August 28, 2019
Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is ...
News

Soliris Withdrawal After Full Recovery in aHUS Patients Is Safe, Study Indicates
August 21, 2019August 21, 2019
Soliris (eculizumab) withdrawal after several months of treatment and full recovery in people with atypical hemolytic ...
News

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019
Imagine living your whole life with a painful disease so rare that only 25 ...
News

Multidisciplinary Approach Needed to Evaluate Patients Suspected of Having aHUS, Case Report Says
August 7, 2019August 7, 2019
A multidisciplinary approach is needed to evaluate patients suspected of having atypical hemolytic uremic ...
News

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 2, 2019August 2, 2019
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...

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