Atypical HUS: PRESS KIT
aHUS Info & Resources
Patients sharing their rare disease journey help bring new levels of understanding to researchers, industry, and the general public. Whether you’re living with atypical HUS or a member of the press, here’s a list of various aHUS information and resource links likely to provide a useful starting point for aHUS interviews, advocacy projects, or social media outreach. The aHUS Alliance, a global affiliation of patient organizations and aHUS advocates around the world, is dedicated to sharing information and resources that foster a better understanding of the challenges faced by those living with the ultra rare disease atypical hemolytic uremic syndrome.
Atypical HUS, a Rare Disease (Medical Information):
Genetic Atypical Hemolytic-Uremic Syndrome – GeneReviews® (updated June 2016)
Research & Publications Organized by Topic, international aHUS research (Links & Lists)
See related article: aHUS Alliance at the KDIGO Conference
Atypical HUS – RESOURCES
Atypical HUS Resources Page Providing a snapshot of key articles & assets, and organized by category, you can see an overview of topic areas including: general info, clinical networks, the aHUS Global Advocate (newsletter), patient engagement, advocacy around the world, teens & children, and much more.
Atypical HUS – INFO Centre
Our Info Centre acts as landing page for cornerstone content that’s key for aHUS info and advocacy, to include pages devoted to: Research & Publications, aHUS Awareness Day & Rare Disease Day, SHUa: en Español, SHUa: en Français, aHUS videos, aHUS Patient Research Agenda & Polls, and our Social Media.
aHUS FACT SHEETS (24 Sept Campaign, created for aHUS Awareness Day)
COMING SOON – the NEW edition for 2021 – Sept -2022, to be release on 24 Sept 2021
2020 – Sept – 2021
What was new this past year for information & research into aHUS (atypical Hemolytic Uremic Syndrome)? Quite a bit. Given the COVID-19 situation and new knowledge about thrombotic microangiopathies (TMAs), our New Edition of the aHUS Alliance fact sheet delves into how to connect what’s important to atypical HUS families regarding updates which make a difference to patients and the physicians who treat them.
(Article, with pdf to Print & Share)
Previous Edition: 2019 Atypical HUS Fact Sheets
Previous edition of the aHUS Alliance Fact Sheets, released Sept 2019, were offered in 2 formats (see full description & links below).
Click HERE for more info & to access both versions on a single page.
2019: aHUS Key Facts & Information (Detailed, Full Version)
aHUS Facts- a Brief Look (One Page, Print & Share)
COMING SOON – 2021 aHUS Global Poll Results on Atypical HUS Diagnosis
2016 aHUS Global Poll
!Results & Graphs (2016)
Poll Questions (2016)
aHUS Alliance – 2 Video Channels to provide Information & Insights
Atypical HUS Clinical Channel – YouTube, features medical & research content
Atypical HUS Global Patient Voice – YouTube, focus on patients & their families
aHUS Awareness Day – 24 September
aHUS Awareness Day – Images & Graphics (from the aHUS Alliance)
Videos for aHUS Awareness Day, see our YouTube Channel: Atypical HUS Global Patient Voice
Videos & Projects: aHUS Awareness Day Library (2015 – Present)
Rare Disease Day – annual global event, the last day of February
Rare Disease Day Resources & Press Kit available in multiple languages (from EURORDIS)
Rare Disease Day – Images & Graphics (from the aHUS Alliance)
aHUS Videos for Rare Disease Day, see our YouTube Channel: Atypical HUS Global Patient Voice
Connect with the aHUS Alliance
|Website: www.aHUSallianceAction.org||E: info@aHUSallianceAction.org|