Author Archives: Mary Chapman

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

aHUS Alliance Global Action Gears Up for a Busy Year

After a year in which COVID-19 was a disruptor, aHUS alliance Global Action is starting 2021 by preparing for Rare Disease Day, research involving family member issues, and a study aimed at learning more about the diagnostic journey of those who have atypical hemolytic uremic syndrome (aHUS). aHUS…

aHUS Triggers

Atypical hemolytic uremic syndrome (aHUS), a chronic multi-organ disease that primarily affects kidney function, may be caused by a genetic mutation coupled with a triggering event. Because aHUS can lead to tissue damage, anemia, and a high risk of bleeding and bruising, it’s important to understand more about the triggers…

FAQs About the aHUS Registry

You may be considering enrolling in the ongoing global atypical hemolytic uremic syndrome (aHUS) registry. Here are some frequently asked questions and answers about the registry to help you learn more about it. What is the global aHUS registry? The global aHUS registry is an observational study (NCT01522183)…

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 affect your ability to focus, learn, retain information, and maintain employment. About aHUS aHUS is characterized by the formation of blood clots in the small…

Global aHUS Registry

If you have atypical hemolytic uremic syndrome (aHUS), you may want to consider enrolling in the ongoing global aHUS registry study still recruiting patients. Information collected through this registry will, among other uses, help researchers to better understand, diagnose, and treat this rare disease. What is aHUS? aHUS…