Life can be challenging with a rare and chronic disease like atypical hemolytic uremic syndrome (aHUS). Family and friends may not be able to understand what you regularly go through. That can be exhausting and frustrating. A metaphor called the spoon theory may help. What is the spoon…
To help persuade decision-making entities to make the atypical hemolytic uremic syndrome (aHUS) treatment Ultomiris (ravulizumab) available in countries with socially funded healthcare, aHUS Alliance Global Action is asking patients and caregivers worldwide to contribute their experience with the therapy. The organization is seeking input about the…
It can be challenging to live with a rare and chronic disease like atypical hemolytic uremic syndrome (aHUS). Using a tool called mindfulness can help you cope with the stress that often accompanies these challenges. What is mindfulness? Mindfulness is the practice of being constantly aware of…
Atypical hemolytic uremic syndrome (aHUS) is a multi-organ disease that primarily affects kidney function. Therefore, travel takes extra planning and preparation. Here are some tips for a safe trip if you have aHUS. What are things to consider before traveling? Plan ahead to avoid rushing or leaving unprepared. In…
A short film by Kidney Research UK looking at how scientific research has helped those with atypical hemolytic uremic syndrome (aHUS) garnered People’s Choice honors at this year’s Charity Film Awards, presented virtually due to the COVID-19 outbreak. Called “Saving Lives — How Genetics Research Changed the…
Atypical hemolytic uremic syndrome (aHUS) is a rare disease that affects the kidneys by causing abnormal blood clots to form in the kidneys’ small blood vessels. In some cases, aHUS can also affect the heart. Multiple organs affected In aHUS, blood clots can affect kidney function and…
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. 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…
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