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 – 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.

2019: aHUS Key Facts & Information  (Detailed, Full Version)  aHUS Facts- a Brief Look  (One Page,  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, see our YouTube Channel: Atypical HUS Global Patient Voice

Videos & Projects: aHUS Awareness Day Library (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

 

 

Additional Resources

Directory of Patient Associations & aHUS Advocacy

aHUS Alliance – Info Centre, Documents

Orphanet – aHUS Alliance & aHUS Global Registry, collaboration. Article: Global aHUS Registry

Atypical HUS India, UN video presentation. Article: UN Rare Disease NGO

Patient Engagement

aHUS Therapeutic Drug R & D (Jan 2017)

RareConnect – aHUS Global Community

 

 

Connect with the aHUS Alliance

Website:  www.aHUSallianceAction.org E: info@aHUSallianceAction.org
Facebook Twitter: @aHUSallianceAct