aHUS in Rare Disease Day 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”.

One of the key ways which the aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world) is seeking to raise awareness globally is to ask those who want to participate in this year’s Rare Disease Day Video, to send  their photo to Jeff Schmidtt along with where they are from, and a question they would like researched. 

The question does not need to be unique, just something they really would like to know.  Jeff  will create a slide for you that will be included in the video to be shown throughout the world  on Feb 28.

Jeff’s  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?”  The question could be about pregnancy and aHUS, or just about anything.  And the question could end up being a research topic!

 The alliance welcomes everyone from our global community to join in this project.

 So 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!