Like many with rare diseases getting a diagnosis is a major issue for aHUS patients. Although it is much speedier than it used to be , getting a diagnosis is…
Patients make appointments to see their primary care physician when a health issue arises, but often more complex cases merit referral to a specialist. Presenting with a wide range…
Many people with chronic kidney disease experience sleep disturbances, apparently affecting patients of all ages and many clinical subtypes. Here we present a curated list of information about sleep disorders and kidney disease, providing excerpts to provide an overview of how sleep disorders may have potential to impact atypical HUS patients of various ages and with varied health histories.
Especially with very rare diseases such as atypical HUS, medical research and education efforts are keys to unlocking information that’s critical for diagnosis and for management of patient care. It’s…
Feeling sick is difficult enough without going to a doctor’s appointment and learning that the diagnosis might possibly be the rare disease atypical hemolytic uremic syndrome, also known as…
Exploring your Questions, Rare Disease Day 2017 Children living with the rare disease atypical HUS are first and foremost children. Despite sharing common medical challenges with adult aHUS patients, it’s…
Questions relating to alternatives to eculizumab for aHUS ,and where those developments were up to, featured within many questions about eculizumab itself in the Rare Disease Day Video. Urijah of…
It’s difficult for rare disease patients to find information about their condition and even more so for patients with medical conditions that affect very small numbers of people, like…