4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment The THIRD Article in our Four Part Series …
aHUS is a savage and cruel illness that kills and maims people. This is something that those who have experienced it, and those who fear experiencing it, try to convey…
Once again, the American Society of Nephrology’s (ASN) Kidney Week adds considerably to the knowledge of kidney disease in all its facets During Kidney Week, this year held in New…
It can be a struggle to find information about medical conditions if you’ve been diagnosed with a rare disease, and more so if you have multiple medical issues which…
Post-Event Update:Presentations were videotaped, and appear on ourAtypical HUS Clinical Channel as the key asset of 2017 aHUS Awareness Day (24 Sept).Our sincere thanks to all participants & attendees at…
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.