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)
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 & both versions on a single page.
1) In Brief: aHUS Fact Sheet (2019-2020) – 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: http://bit.ly/aHUSinBrief
2) Atypical HUS: Facts & Research (2019-2020) At 24 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: http://bit.ly/aHUS2019KeyInfo
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
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
aHUS Alliance – Rare Disease Day IMAGES
aHUS Alliance – aHUS Awareness Day – Images & Graphics
Note: Original content from the aHUS Alliance was designed to be shared by aHUS advocates around the world. Please credit the aHUS Alliance. Questions? Contact Us: 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
2019 aHUS Awareness Day – Video (See also 2019 aHUS Day blog)
24 Sept – aHUS Awareness Days from past years
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 aHUS Awareness 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
2019 aHUS Alliance RD Day Project: Details Watch It
2018 aHUS Alliance RD Day Project: Details Watch It
2017 aHUS Alliance RD Day Project: Details Watch It
Additional Resources
Directory of Patient Associations & aHUS Advocacy
aHUS Research & Publications – Newly Expanded for Sept 2019
aHUS Global Patients’ Research Agenda – Adopted Feb 2019
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 DRUGS – 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
Facebook @aHUSalliance Twitter: @aHUSallianceAct
aHUS Awareness Day – Twitter campaign @aHUS24Sept Hashtags #aHUS24Sept and #SHUa24Sept
Email: info@aHUSallianceAction.org
