The Atypical HUS Foundation

October 2015 Blog Posts (6)

Pediatric Adventure in Orlando

Earlier this month, Ethan and I had the incredible opportunity to travel down to Orlando for the first aHUS pediatric event. This was for patients ages 10-18 and one parent. We arrived late Friday night and were treated to a delicious dinner with all the attendees, One Source case managers, Alexion and Global Genes staff. Upon arrival we were all given bags with items for the weekend and in the kids bags were the most adorable stuffed Husky dogs. Each patient got their own aHUSky named…

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Added by Anne Bruns on October 29, 2015 at 8:12am — No Comments

The "aHUStonishing Heroes" Project

Do you know the story of your fellow aHUS friend?

Do…

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Added by Donna Kolp on October 28, 2015 at 6:22pm — 2 Comments

Invisible Disabilities Week, Oct 18-24th

It’s Invisible Disability Week !

     Atypical HUS seems to throw a variety of challenges our way.  Accurate and quick diagnosis is difficult for such a complex and rare disease, with  informational resources often not readily available from the medical community to aHUS patients and caregivers.  From the patient or family viewpoint, a compounding factor can…

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Added by Linda Burke on October 21, 2015 at 12:00pm — No Comments

November 14th in Atlanta!!!!

Who am I going to get to see in Atlanta in a few weeks?  Excited to see new folks and old friends at the Atlanta meet up?  Make sure to sign up today!  Also excited to hear a new medical perspective - every doctor explains things just a little differently and a little more sinks into my skull each time! 

Cant wait to see you all!

https://globalgenes.org/ahus-registration/

Added by Phyllis Ann Talbot on October 19, 2015 at 5:48pm — No Comments

The Australian Government is Going to Stop Soliris Access After 12 Months to "See What Happens." Let's Tell Them No!

December 1, 2014 marked a very important day in Australia.  That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia.  This has saved lives.  But according to policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active.  That will likely be everyone as Soliris effectively…

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Added by Jeff Schmidt on October 18, 2015 at 1:00pm — 1 Comment

aHUS Mutations and C3, a Research Article

Check out this article, written by some of the most highly regarded aHUS ‘top docs’ from around the world:

Mapping interactions between complement C3 and regulators using mutations in atypical hemolytic uremic syndrome.…

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Added by Linda Burke on October 17, 2015 at 9:00pm — No Comments

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