The Atypical HUS Foundation

June 2015 Blog Posts (8)

Global Genes meet up

Ok, Ahus folks Global Genes meetup still has room for the Minneapolis Minnesota patient meeting August 7 and 8!!!

You will hear a fantastic and informative presentation by one of the University of Iowa's expert physicians, Dr. Craig Shadur.

Also a Friday night presentation by a mother of a son with Ahus, Barbara Farcher and a Saturday presentation by an adult Ahus patient, Jill Ziegler



This meet up will not disappoint and you will leave feeling empowered and ready to battle… Continue

Added by Jill Ziegler on June 29, 2015 at 8:06pm — No Comments

aHUS Alliance - Conference of Issues & Information among 12 Nations

     The aHUSUK hosted their 2nd aHUS Patient and Family conference on Saturday, followed today by the aHUS Alliance of 12 nations, currently happening now.  Many nations attended a very informative meeting on Saturday hosted by the the UK patient organization, with multiple presentations by various physicians with clinical and research expertise.  Similar to the 2014 Family Conference that The Atypical HUS Foundation hosted with the University of Iowa.  I'm pleased to report that Len…

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Added by Linda Burke on June 28, 2015 at 9:30am — 2 Comments

Put Your Facebook Skills to Use to Help Our Friends in Sweden Gain Access to Soliris (eculizumab)

The situation in Sweden is bad.  Though those with aHUS who are presently on Solris will remain on it, no new patients will have access to Soliris.  This is unacceptable.  Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII is fighting hard for all those with aHUS.  We need to help him and all our friends in Sweden.…



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Added by Jeff Schmidt on June 25, 2015 at 2:46pm — No Comments

Global Genes and Ahus Foundation meetup in St. Louis, MO June 2015

As soon as you arrived in St. Louis this weekend the air was hot and sticky and there were nothing but a sea of red shirts everywhere. Why? Because you were in STL in June and the Cardinals had a home game! Which we won by the way!!! Go Cards!!!

But for about 30 of us, we were not there for the game. No, we were there for much more serious reasons, but like the Cardinals, WE ARE WINNING!!!! We are survivors of Ahus. Many of us are just starting our journey with this complicated disease and… Continue

Added by Jill Ziegler on June 14, 2015 at 5:49pm — 1 Comment

St. Louis Meetups with The aHUS Foundation and Global Genes, 2015

St. Louis Meetup

at the

Ballpark Village Hilton

          I have to admit to…

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Added by Cheryl Biermann on June 14, 2015 at 3:30pm — 3 Comments

Sweden Tells its People “No Soliris for New Patients”

We already were aware of the unequal care of those with aHUS in Sweden.  It seemed like where you lived (or your postal code) determined whether Soliris would be available.  This was going to be a hard enough fight.

 

But now I’m told by Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII, that the Swedish Health Minister has decided that no new patients will receive…

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Added by Jeff Schmidt on June 10, 2015 at 5:37pm — No Comments

New Orleans Meet up

Yesterday, the New Orleans Meet Up wrapped up its session.  Although it was a small group, it had a nice intimate vibe.  I especially enjoyed the Friday night dinner.  My father was able to attend as my plus one since my hubby has been dealing with getting my Father in Law settled into his Long Term Acute Care facility & preparing my Mother in Law to be living on her own.  Saturday during the lunch, my parents came down with Devin and ate lunch with the group.  Devin got to meet another…

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Added by Paula Blanchard Lamigo on June 7, 2015 at 4:49pm — 2 Comments

aHUS News - In America and Beyond

The aHUS Advocate – What’s New(s)?

 

     We’ve finally made it to June, and hopefully all of our friends in the aHUS community are looking forward to some fun and relaxation in better weather!  We share the joy of our aHUS pediatric patients at the start of summer vacation, and encourage those of you facing special medical challenges right now to share your story online…

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Added by Linda Burke on June 4, 2015 at 9:00pm — No Comments

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