Looking for the latest facts and key research about the rare disease atypical hemolytic uremic syndrome? You’ve found it. Information and medical knowledge can change rapidly, which can be problematic for those looking for the latest facts and key research about the rare disease atypical HUS (aHUS).
The aHUS Alliance, an informal group of aHUS advocates and national aHUS patient organizations, in 2015 launched our first aHUS Awareness Day campaign. We continue to create accurate and current resources year-long, as well as providing information and images for our annual 24 Sept campaigns. (FMI on aHUS Day https://bit.ly/aHUSdayInfo ) One such asset is this print-friendly set of aHUS-specific facts.
Easy to understand, this describes the rare disease aHUS and how it impacts patients and their families. Available to read or print (as a double-sided page) this pdf is suitable to distribute at events or meetings, as well as to share with friends or the general public (employers, school staff, and others). This simple resource was designed to be useful for all nations, public and rare disease awareness campaigns, aHUS patient organizations, and international groups and advocates interested in atypical HUS.
2023 – Sept – 2024
Share the Link: https://bit.ly/aHUS2023facts
Don’t miss these Highlights – see more by visiting our Information Centre
Atypical HUS Research & Publications – a ‘Virtual Library’, organized by Topic
RESOURCES & Key Assets – An index to Information, Networks, and Articles
2021 Poll of aHUS Patient Experiences with Diagnosis: 4 data-driven Reports, released in 2022. (42 question poll, 227 participants) https://bit.ly/2021aHUSPollData
2022 aHUS Landscape of Therapeutic Drugs – An Overview & Horizon Scanning https://bit.ly/aHUS2022drugReview
aHUS Community Advisory Board (CAB) (Established 2022) An independent, international board of patients and family caregivers, we provide the trained and Collective Expertise of aHUS Advocates to advise in areas of research and development, clinical trials, patient engagement and access to effective treatments for aHUS worldwide. https://bit.ly/aHUSglobalCAB