The Atypical HUS Foundation

aHUS Alliance Global Video Project for Rare Disease Day, February 28, 2017

Rare Disease Day is right around the corner.  The world will join together on February 28, 2017 to raise awareness for rare diseases.  The theme for the upcoming Rare Disease Day is “Research”.   

 

 

Through the global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world) I am asking for those who want to participate in this year’s Rare Disease Day video, to send me their photo along with where you are from, and a question you would like researched.  Your question does not need to be unique, just something you really would like to know.  I will create a slide for you that will be included in the video to be shown on Feb 28.

My question from the sample slide above is “My daughter has the Factor H mutation and has relapsed without Soliris.  Will she ever be able to safely stop her Soliris treatments?”  Your question could be about pregnancy and aHUS, or just about anything.  And your question could end up being a research topic!

 

We welcome everyone from our global community to join in this project.

 

Send in:

-       Photo

-       Name and where you are from

-       Your Rare Disease Day aHUS question.

 

You can email your submission to Jeff Schmidt at jeffschmidt.ahusadvocateusa@gmail.com .

 

Submissions are due by the end of Feb. 16, 2017 to allow time to put this together, but the earlier you can turn in your entry the better!

 

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