Mary Chapman, features writer —

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…

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…

For Rare Disease Day on Feb. 28, aHUS Alliance Global Action is inviting people worldwide to take part in a video/slideshow project aimed at raising awareness of atypical hemolytic uremic syndrome (aHUS) and the needs of its community. To participate, patients and caregivers are asked to send a…

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…

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…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

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…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

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)…

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…