Added by Jill Ziegler on June 29, 2015 at 8:06pm — No Comments
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…Continue
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.…
Added by Jeff Schmidt on June 25, 2015 at 2:46pm — No Comments
St. Louis Meetup
Ballpark Village Hilton
I have to admit to…Continue
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…Continue
Added by Jeff Schmidt on June 10, 2015 at 5:37pm — No Comments
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…Continue
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…Continue
Added by Linda Burke on June 4, 2015 at 9:00pm — No Comments