aHUS Alliance – Press Kit

 

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 – effectively an aHUS alliance Press Kit.

 

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)

International consensus approach to Management of aHUS in Children.  (Apr 2015)

KDIGO Conclusions from a “Kidney Disease: Improving Global Outcomes” for aHUS and C3 Glomerulopathy  (Dec 2016)    See related:  aHUS Alliance at the KDIGO Conference

 

 

 

 

aHUS FACT SHEETS (created for the 24 Sept Campaign – aHUS Awareness Day)

 

2018 Atypical HUS Fact Sheets

 

aHUS Alliance Fact Sheets, released Sept 2018,  are offered in 2 formats (see full description & links below).  Click HERE for more info & both versions on a single page.

 

1)  In Brief: aHUS Fact Sheet (2018-2019) – One page print-friendly version, available to read or download as a two-sided document and pdf, to share at events or meetings, offer to friends, provide to the press or public, or share with school staff or with employers.     Short Link:  https://bit.ly/2I4P5Re

 

2)  Atypical HUS: Facts & Research (2018-2019) At 23 pages, the aHUS Alliance offers a more comprehensive (and fully cited) document that includes our May 2018 “aHUS Therapeutic Drug Pipeline” chart along with current aHUS facts and links to specific information and research.   Short Link:  https://bit.ly/2NZjUw8

 

 

 

 

2016 aHUS Global Poll

 

Results & Graphs

Poll Questions

2016 aHUS Global Poll: White Papers

The aHUS Alliance provides an interpretation of 2016 poll data in the context of aHUS research, on two key global issues:

 * Access to aHUS Treatment   

 * aHUS and Dialysis Insights 

 

 

 

 

 

Rare Disease Day

aHUS Alliance – RD Day  IMAGES

2017 aHUS Alliance RD Day Project:   Details     Watch It

2018 aHUS Alliance RD Day Project:   Details     Watch It

 

 

Know aHUS – Know Us  (Living with atypical HUS)

Know aHUS – Know Us.   An overview of facts & issues about people living with atypical HUS, to include: 1)  a one-page (dbl sided) print-friendly document to share with employers, educators, and others and 2) the aHUS Alliance ‘red leaf’ graphic.

 

 

 

 

aHUS Alliance – Images

Created by volunteers of the aHUS Alliance Global Action team, an international group of aHUS Patients & Caregivers supporting the goals of the aHUS Alliance.  Advocacy images appear on our Twitter account  @aHUSallianceAct

Note:  Original content from the aHUS Alliance was designed to be shared by aHUS advocates around the world.  Please credit the aHUS Alliance.  Email the aHUS Alliance with questions at info@aHUSallianceAction.org.

Example of aHUS Alliance advocacy images, original slogan:  H.O.P. E.  from March 2018

 

H. O. P. E.          HEALING       OPTIONS        PEACE       EMPATHY

 

 

aHUS Alliance – Video Channels on YouTube

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 annual Campaign

2015 – Press Release, First world aHUS Awareness Day(See also RareConnect blog)

2015 aHUS Awareness Day – Video (See also 2015 Video Project blog)

2016 – Press Release, aHUS Awareness Day campaign:  Rising above aHUS

2016 aHUS Awareness Day – Video  (See also 2016 Video Project blog)

2017 Rare Disease Day – Video   (See 2017 Video Project blog)

aHUS  Awareness Day – Images & Graphics  (from the aHUS Alliance)

Videos for aHUS Awareness Day, see our YouTube Channel: 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

 

 

 

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  (May 2018)

RareConnect – aHUS Global Community

aHUS Drug Access:  A Global Panel Proposal (So African Pediatric Nephrology, article)

 

 

 

 

Connect with the aHUS Alliance

 

Website   www.aHUSallianceAction.org                           

Email:  info@aHUSallianceAction.org

 

Facebook    @aHUSalliance                                                                 Twitter:  @aHUSallianceAct

 

aHUS Awareness Day – Twitter campaign @aHUS24Sept     Hashtags #aHUS24Sept and #SHUa24Sept