Author Archives: Mary Chapman

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 perspective, allowing you see the world, and your disorder, in a different light. What is shoshin? The word shoshin comes from Zen Buddhism, and means “beginner’s…

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, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

About OneSource for aHUS Patients

If you have atypical hemolytic uremic syndrome (aHUS) and are being treated with Soliris (eculizumab) or Ultomiris (ravulizumab-cwvz), you may wish to consider enrolling in OneSource, a complimentary and personalized patient support program by Alexion, the therapies’ manufacturer. What is aHUS? aHUS is a rare multi-organ disorder…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

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…