2019 – SEPT – 2020
Atypical HUS: Fact Sheets & Research
Atypical Hemolytic Uremic Syndrome – a Rare Disease
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 hemolytic uremic syndrome (atypical HUS or aHUS).
The aHUS Alliance, an international umbrella group of atypical HUS patient organizations and rare disease advocates, annually has created a robust and varied set of images and resources for aHUS Awareness campaigns each 24 September. (On Twitter @aHUS24Sept and @aHUSallianceAct )
aHUS Alliance Fact Sheets are offered in 2 formats (see full description & links below):
1) In Brief: Atypical HUS Fact Sheet (Edition: 2019 – SEPT – 2020) – Single page to Print & Share.
Short Link: http://bit.ly/aHUSinBrief
Print-friendly version. This one page, double-sided set of facts & info offers an overview of the rare disease atypical Hemolytic Uremic Syndrome.
Easy to understand, this description of the rare disease aHUS 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.
2) Atypical HUS: Key Facts & Research (Edition: 2019 – SEPT – 2020) The aHUS Alliance offers a more comprehensive document with research citations (to include the aHUS: In Brief version), featuring boxed ‘aHUS Highlights in Research’ for the past year.
Short Link: http://bit.ly/aHUS2019KeyInfo
This 24 page document is filled with detailed, current aHUS information and scores of links to varied fields of atypical HUS research. Created by the aHUS Alliance and released Sept 2019 as a fully curated compilation of disease-specific key information, this document provides a core resource for those who wish to learn more in depth about the rare disease atypical HUS. Boxes of aHUS research highlights call attention to publications released this past year on aHUS topics of high interest such as: atypical HUS in the ICU, diagnosis, genetics, multi-organ involvement, pregnancy, and more.
Note: These aHUS Alliance fact sheets have been released Sept 2019 to mark aHUS Awareness Day. They will remain as a key resource throughout the year, until 24 Sept 2020 resources launch.
About the aHUS Awareness Day campaign
Founded by the aHUS Alliance in 2015 and recognized each 24 September, aHUS Awareness Day was designed to raise visibility of rare disease healthcare for aHUS patients, to highlight atypical HUS research, shed light on treatment issues facing physicians and patients, and provide insight into the needs of people living with atypical HUS.
Our global aHUS Awareness Day campaign each year includes disease-specific resources and updated, objective information for use in all nations and by all stakeholders. Click HERE for details about aHUS Awareness Day in 2019.
