The 3rd international aHUS Awareness Day is just 2 months away. The world will join together on September 24, 2017 to raise awareness for the issues and people affected by the rare disease atypical HUS (aHUS or SHUa in some languages).
In keeping with the theme of the Thrombotic Microangiopathy Symposium: Through the Lens of aHUS meeting on 24 August 2017 in Boston, this year’s aHUS Awareness Day project will give patients and aHUS families the chance to provide insight to medical professionals and aHUS researchers. All nations and all people impacted by aHUS are invited to participate in this 2017 aHUS Awareness Day video project.
What message would you like to send medical professionals, pharma or industry leaders, or aHUS researchers? To participate, send your photo along with where you’re from, and a message that you feel is important for them to know about aHUS treatment, concerns or issues you’ve faced, situations you’ve encountered, suggestions to improve specific things, or details you feel may have been overlooked by people who are unaware of what patients and families face. Your message does not need to be unique, just something you really would like to tell or that you feel might aid understanding or help others.
Below is a sample slide. Please be sure to keep your message short enough to fit in the message box (see slide). Jeff Schmidt is the volunteer lead for this global aHUS awareness project, and he’ll create a slide for you that will be included in the video to be premiere on 24 September 2017, world aHUS Awareness Day. We welcome EVERYONE from our global aHUS community to join in this project.
Email your submission to Jeff Schmidt at firstname.lastname@example.org Send in:
– Name and where you are from
– What you would like to tell the medical professionals and aHUS researchers.
Entries are due by the deadline of September 10, 2017 but this aHUS Alliance project is now underway – and we encourage you to turn in your entry as early as possible.
Information & Resources
Click Topics to Learn More
Follow aHUS Awareness Day on Twitter @aHUS24Sept
Join in with Hashtags #aHUS24Sept and #SHUa24Sept
aHUS Awareness Day 2017 (Blog & Details)
Rare Disease Day Project 2017: aHUS Patient Voices (Blog) (Completed Project)
aHUS Awareness Day Project 2016 (Blog) (Completed Project)
aHUS Fact Sheets: Full & Brief versions
aHUS Alliance Press Kit
Info Centre – Documents
aHUS Alliance YouTube Channels:
Atypical HUS Clinical Channel – YouTube, features Medical & Research content (Also see Playlists)
Atypical HUS Global Patient Voice – YouTube, focus on Patients & their Families