Atypical Hemolytic Uremic Syn. community

Atypical Hemolytic Uremic Syndrome or aHUS is an ultra rare autoimmune disorder. Below you'll find information and insights into living with a diagnosis of aHUS.

U of Iowa's aHUS Family Conference Videos by Linda published 8 days ago


Dr. Carla Nester's topic: Definition of aHUS, Diagnosing aHUS, Overview of Complement

 

Dr. Christie Thomas' topic:  Treatment of atypical HUS:  Plasmathe...

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Story by Mireya published 14 days ago

aHUS story published Ever since Jose contracted aHUS and spent 4 years on hemodialysis, I had time to think over and change my lifestyle. Unwillingly, I started doing what always had been in second place, writing and listening. During those 4 years, I met many people and learned about their stories. One day I signed up for a literary contest at the Hospital, and did the same the following year, and I did so for 4 years and finally this year I got an award and the Jose's story has been published in a book along with other winners. The me...

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aHUS Soaring Voices Videos by aHUS patient advocates published 24 days ago


Our daughter Lou-Anne has been affected since 10 months old with aHUS of the C3 mutation. This video traces her life from birth to the kidney transplant made possible by a U.S. treatment.

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Share your video in support of Rare Disease Day! by Linda Burke published 28 days ago


In partnership with NORD and Eurordis, the Foundation for Children with Atypical HUS announces the launch of its SOARING VOICEScampaign.  A global rare disease awareness...

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Atypical Hemolytic Uremic Syn. Recent Activity

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    split in liver
    topic, published 3 days ago

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    I need your help. There is a little girl using Eculizumag and her kidney is fine 100% doctors has decided to put in a piece of liver. Anybody has this option in ahus ??? i do not know articles about this

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    Soliris
    topic, published 12 days ago

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    Bonjour a tous,et avec du retard,une heureuse année .Depuis 1 mois,nous avons dus arreter les injections de Soliris pour Constance,car elle devenait allergique,elle ne le supporte plus!!!! J'ai très peur qu'elle rechute !

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    Soliris
    topic, published 12 days ago

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    Good evening, this is my third attempt and I hope that this time will be the good one: when SOLIRIS was injected on January 3, as soon as the infusion began, Constance began coughing, had trouble swallowing, was extremely nauseous, usually that would happen at the "rincure", but not systematicall...

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    Merry Christmas
    topic, published 2 months ago

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    Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones. So my proposal is everyone offer a little prayer and send your thoughts heavenward tha...

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    UK PATIENTS AND FAMILIES SUPPORT GROUP
    topic, published 3 months ago

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    Hello

    Thanks Nicholas for directing me to this community. Already as with the Foundation for children with aHUS site I have found much information to absorb.

    It must say something, either about the global nature of aHUS ,or the slowness of the UK to catch on, that earlier postings about th...

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    Journal Club: Blocking complement prevents antibody mediated rejection in positive crossmatch liv...
    topic, published 3 months ago

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    Blog post by Dr.Vinay Nair, Mt Sinai NYC, Transplant Division

    http://www.nephronpower.com/2011/11/journal-club-blocking-complement.html

    Refers to this recently published article:
    http://www.ncbi.nlm.nih.gov/pubmed/21942930

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    AIRG France's Annual Day
    topic, published 5 months ago

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    AIRG is the French Association for Genetic Renal Diseases. They are hosting their annual information day in Montpellier, France on October 15th.

    Program can be found here:
    http://www.airg-france.fr/wp-content/uploads/2011/09/PROGRAMME-de-la-journ%C3%A9e-annuelle-2011.pdf

    Nicolas, you going...

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    Nice interview with Prof Loirat...
    topic, published 5 months ago

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    aHUS expert from France interviewed during the 2011 European Nephrology Congress in Prague: http://www.primeoncology.org/2011/prague_2/index.html

    Merci Nicolas

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    aHUS Resource List
    document, published 5 months ago

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    aHUS Stories of Hope
    document, published 5 months ago

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    Stories of patients living with atypical HUS