The Atypical HUS Foundation

September 2015 Blog Posts (7)

aHUS Regional Meetings, Only a Few Left in 2015!

     As fall begins, new opportunities to learn and connect are still ongoing in the aHUS community across America.  The latest aHUS regional meeting was hosted by NORD in Chicago on Sept. 18-19th, with the highlight being a presentation by aHUS medical expert Dr. Bradley Dixon of Cincinnati Children's Hospital Medical Center.  Dr. Dixon’s presentation was clear and concise, but especially valuable and appreciated was Dr. Dixon’s willingness to answer questions from the…

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Added by Linda Burke on September 27, 2015 at 3:48pm — No Comments

Sept 24th - Today is international aHUS Awareness Day!

     It’s the 1st ever international aHUS Awareness Day around the world!  September 24, 2015 is marks the inaugural launch as a global day designated to add visibility to those challenged by the very rare disease atypical HUS and sponsored by the aHUS Alliance. 

     Key projects for the 2015 aHUS Awareness Day campaign included:

      * A PRNewswire announcing this special day of recognition for aHUS patients, their issues, and various…

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Added by Linda Burke on September 24, 2015 at 1:30pm — No Comments

aHUS Awareness Day, September 24, 2015 Outreach Project

Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching.  We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.

 

For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that…

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Added by Jeff Schmidt on September 18, 2015 at 1:30pm — 3 Comments

Be an aHUS Advocate - Sept 24th is aHUS Awareness Day

     Help make the issues and needs of the aHUS community visible - join others from around the world to send messages that provide insight into the challenges faced by atypical HUS patients.

You alone can best describe the impact of aHUS on your life and your relationships. Who better to explain the many challenges of dealing with aHUS treatment while working, being a parent, or struggling with financial and emotional issue?  Since aHUS is a complex and rare disease,…

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Added by Linda Burke on September 17, 2015 at 10:00am — No Comments

One year anniversary

It will be one year next month that I started treatment with Soliris for aHUS.   My oncologist is researching my stopping treatments.  Has any other member stopped their infusions.

Added by Lynda Swope on September 7, 2015 at 1:41pm — 3 Comments

aHUS Awareness Day, September 24, 2015 Kids Project

Hey Americans!  We have another project for the first ever aHUS Awareness Day on September 24, 2015.  Alyssa Deffenbaugh and I have been working together through the Atypical HUS Foundation on ideas for this special day.

For this project, Alyssa came up with the brilliant idea of getting the kids involved.  She would like them to draw a picture that shows what it means to be healthy or maybe how they feel about having…

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Added by Jeff Schmidt on September 2, 2015 at 3:17pm — 1 Comment

Sept 24 Marks the first aHUS Awareness Day!

 Join In - 1st  annual aHUS Awareness Day, set for Sept 24, 2015!

     The aHUS Alliance is an international federation of 14 nations dedicated to promoting aHUS advocacy around the world.  On 24 September 2015, help us raise visibility for patient needs and issues by joining in to post, blog, and Tweet about the aHUS community.

     Between now and aHUS Awareness Day, you’ll see…

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Added by Linda Burke on September 1, 2015 at 5:30pm — 2 Comments

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