Information and medical knowledge can change rapidly, which can be problematic for those looking for the latest 2018-2019 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: aHUS Fact Sheet (2018-2019 – One page version to print and share, as well as
2) Atypical HUS: Facts & Research (2018-2019) At 23 pages, the aHUS Alliance offers a more comprehensive (and fully cited) document that includes our May 2018 “aHUS Therapeutic Drug Pipeline” chart along with current aHUS facts and links to specific information and research.
Note: These aHUS Alliance fact sheets have been released Sept 2018 to mark aHUS Awareness Day. They will remain as a key resource through the year, until 24 Sept 2019 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.
Atypical HUS: In Brief (2018-2019 Edition) for this Short Version, click HERE
Short Link: https://bit.ly/2I4P5Re
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.
Atypical HUS: Info & Research (2018-2019 Edition) for this Long Version, click HERE.
Short Link: https://bit.ly/2NZjUw8
This 23 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 2018 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. (Be certain to check out the colored boxes noting the year’s recent research on select topics – with box headings provide a FMI link to the last 5 years of research on that topic.)
Tables highlight recently released research on aHUS topics of interest such as: atypical HUS in the ICU, diagnosis, multi-organ involvement, pregnancy, drugs in development and more. Links are provided to a host of aHUS research from various years, to such cornerstone content as the NIH NCBI GeneReview: Genetic Atypical Hemolytic-Uremic Syndrome , as well as a wide array of resources and tools.
About the aHUS Alliance:
A key focus of the aHUS Alliance website is to act as a connecting hub for collaborations in the aHUS arena, and to serve as a platform to provide atypical HUS information and resources of global interest. Creating disease-specific articles and assets for aHUS patient organizations and advocates worldwide, the aHUS Alliance also serves as an international connecting hub for collaborative efforts. We encourage you to visit our webpage of advocacy in nations around the world, which supports and connects communication to highlight each nation’s patient voice and provides insight into the priorities of each patient organization.
Click to learn more About the aHUS Alliance.
View the aHUS Alliance network of aHUS Clinicians & Investigators.
Images & other Resources are available within the aHUS Alliance – Press Kit.