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 – 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)

2021 FAQs – Answers to the most Frequently Asked Questions

What is atypical HUS?

How many people have atypical HUS?

What causes atypical HUS? Are there different types of aHUS?

What are the symptoms of aHUS?

How is atypical HUS treated?

Is there a cure for atypical HUS? How long is a person treated for aHUS?

There seems to be little advocacy effort or awareness about atypical HUS, what can be done?

Click below for a Print-friendly pdf to Read & Share

FAQs for aHUS Awareness Day 2021 (pdf)

2020 – Sept – 2021

aHUS Alliance Fact Sheet, released to mark aHUS Awareness Day (24 Sept 2020)

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.

Click HERE for 2020 – Sept – 2021 Fact Sheet

(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.