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.
Genetic Atypical Hemolytic-Uremic Syndrome – GeneReviews® (updated June 2016)
Research & Publications Organized by Topic, international aHUS research (Links & Lists)
2020 Atypical HUS Fact Sheets
aHUS Snapshots – What’s New this Year?
Atypical HUS: At the Intersection of COVID-19, Thrombotic Microangiopathy & Complement Research. We look at aHUS advancements and new research over the past year, providing original content that ‘connects the dots’ and helps focus attention on topics that address issues & needs with the international aHUS community.
Quick Link http://bit.ly/aHUSfacts2020
2019 Atypical HUS Fact Sheets
aHUS Alliance Fact Sheets, released Sept 2019, are 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)
2019 aHUS Facts- a Brief Look (One Double-Sided Page, to Print & Share)
Results & Graphs (2016)
Poll Questions (2016)
Atypical HUS Global Patient Voice – YouTube, focus on patients & their families
aHUS Awareness Day – Images & Graphics (from the aHUS Alliance)
Videos for aHUS Awareness Day, YouTube: Atypical HUS Global Patient Voice
Articles, Videos & Projects: aHUS Awareness Day (2015 – Present)
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
(Info & Assets for the aHUS community)
Atypical HUS: RESOURCES
Key assets and information specific to the rare disease atypical hemolytic uremic syndrome, or atypical HUS.
Resource sections include networks for families and clinicians, medical info, patient experiences, interviews, drug discovery & research, aHUS Patient Research Agenda & polls, graphics, and more.
aHUS Alliance – INFO CENTRE
Email Us: Info@aHUSallianceAction.org