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 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
aHUS FACT SHEETS (24 Sept Campaign, created for aHUS Awareness Day)
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.
aHUS Key Facts & Information (Detailed, Full Version)
Short Link: http://bit.ly/aHUS2019KeyInfo
aHUS Facts- a Brief Look (One Double-Sided Page, to Print & Share)
Short Link: http://bit.ly/aHUSinBrief
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 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, 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
aHUS Therapeutic Drug R & D (Jan 2017)
RareConnect – aHUS Global Community
Connect with the aHUS Alliance
| Website: www.aHUSallianceAction.org | E: info@aHUSallianceAction.org |
| Twitter: @aHUSallianceAct |
