(archived 2020) aHUS Press Kit - aHUS Alliance Action

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

Atypical HUS – our INFO CENTRE

aHUS Resources – Research & Publications – Global aHUS Poll Results – Patients’ Research Agenda – Assets in FR & ES – More!

aHUS Images – Visual ‘library’ of informational and advocacy images.

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.

CLICK HERE

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.

aHUS Key Info & Facts: 2020-Sept-2021

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

Connecting the Dots https://bit.ly/aHUS2021survey

Info & 2021 aHUS Survey RESULTS

1st Report (issued 24 Sept 2021) Article w/ Background REPORT 1 (pdf): Patients’ experience and perception of the aHUS diagnostic process

2nd Report (issued 18 Dec 2021) – Article w/ Background REPORT 2 (pdf): Patients’ experience and perception of the aHUS diagnostic process

3rd Report (issued 28 Feb 2022) Article w/ Background REPORT 3 (pdf) Patients’ experience of specialist
care and the diagnosis decision

4th Report (issued 10 June 2022) Article w/ Background REPORT 4 (pdf) Impact of process event and patient
demographic variables on process outcomes

Poll QUESTIONS: Click HERE to View the 2021 aHUS Diagnostic Survey tool

2016 Survey

Results & Graphs (2016)
Poll Questions (2016)
2016 Poll White Papers: Access to aHUS Treatment also aHUS and Dialysis Insights

CLICK HERE to view all assets for our 2014, 2016 & 2021 Polls

aHUS Alliance – Video Channels

Atypical HUS Clinical Channel – YouTube, features medical & research content
(Also see Playlists)

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

Articles, Videos & Projects:aHUS Awareness Day(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

Articles, Videos & Projects: Rare Disease Day

(Info & Assets for the aHUS community)

Atypical HUS: RESOURCES

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.