aHUS Press Kit

 

 

 

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 SyndromeGeneReviews® (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 FACT SHEETS (24 Sept Campaign, created for aHUS Awareness Day)

 

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.

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)

 

 

2016 aHUS Global Poll

 

Results & Graphs (2016)

Poll Questions  (2016)

2016 Poll White Papers: Access to aHUS Treatment  also aHUS and Dialysis Insights

 

 

aHUS Alliance – Video Channels

Atypical HUS Clinical ChannelYouTube, features medical & research content
(Also see Playlists)

 

Atypical HUS Global Patient VoiceYouTube, 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.

 

SHUa: en español

 

 

SHUa: en español

 

 

 

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

Follow the aHUS Alliance on Social Media