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)
KDIGO Conclusions from a “Kidney Disease: Improving Global Outcomes” for aHUS and C3 Glomerulopathy (Dec 2016)
See related article: aHUS Alliance at the KDIGO Conference
aHUS Resources – Research & Publications – Global aHUS Poll Results – Patients’ Research Agenda – Assets in FR & ES – More!
Various images, Main Page. Links to aHUS Awareness Day & Rare Disease Day images too.
aHUS FACT SHEETS (24 Sept Campaign, created for aHUS Awareness Day)
2021 Atypical HUS FAQs
A new format for this year’s annual aHUS fact sheet released to mark the 7th annual aHUS Awareness Day, this features seven questions most often asked by patients, family members, and the general public. Each FAQ is written in simple terms, making it great to share at school, work, or with friend.
available as an ARTICLE with a link to ‘Print & Share’ pdf
2020 Atypical HUS Fact Sheets
aHUS Snapshots – What’s New for 2020?
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)
2021 aHUS Global Poll
Atypical HUS Diagnosis: 2021 Survey of Patient Experiences
SURVEY LAUNCH – PURPOSE & Background
Info & 2021 aHUS Survey RESULTS
CLICK HERE to view all assets for our 2014, 2016 & 2021 Polls
aHUS Alliance – Video Channels
Atypical HUS Global Patient Voice – YouTube, focus on patients & their families
aHUS Awareness Day – 24 September
2015 – Press Release, First world aHUS Awareness Day (See also RareConnect article)
2016 – Press Release, aHUS Awareness Day campaign: Rising above aHUS (Updated Info)
aHUS Awareness Day – Images & Graphics (from the aHUS Alliance)
Videos for aHUS Awareness Day, YouTube: Atypical HUS Global Patient Voice
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
(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.
Additional Info & Resources
Directory: Patient Associations & aHUS Advocacy
Network of aHUS Clinicians & Investigators
aHUS Alliance – INFO CENTRE
Orphanet – aHUS Alliance & aHUS Global Registry, collaboration. Article:Global aHUS Registry
Atypical HUS India, UN video presentation. Article: UN Rare Disease NGO
RareConnect – aHUS Global Community
Connect with the aHUS Alliance
Email Us: Info@aHUSallianceAction.org