The Atypical HUS Foundation

September 2014 Blog Posts (8)

Biomarkers and aHUS Activity

     Many aHUS patients, parents, caregivers, and supportive family members are firm believers that information is the key to improved patient outcomes.  We strongly agree!

     One hot topic for diagnosis, treatment, and patient monitoring is biomarkers - but most of information surrounding this topic is so new little has been published to date in medical journals.  The Atypical HUS Foundation…


Added by Linda Burke on September 25, 2014 at 11:30am — 2 Comments

We are the lucky few

Imagine sitting in a room of several hundred people. All with different rare diseases. Imagine hearing there are over 7,000 ultra rare diseases and only 5% of them have a treatment or cure. Imagine being that 95% who right now at this very second feel hopeless, lost and unsure of themselves or a loved ones future. Imagine being an ultra rare patient with no name for your disease or disorder. Fighting daily and not knowing what you are fighting against. How discouraged would you… Continue

Added by Jill Ziegler on September 17, 2014 at 10:16pm — 3 Comments

aHUS Family Conference - REGISTRATION ENDS Friday, Sept 19th

Only 2 Days Left to Register for Atypical HUS Family Conference on Oct. 24-26th at the University of Iowa!…


Added by Linda Burke on September 17, 2014 at 2:30pm — No Comments

Oct. aHUS Convention in Iowa - Registration ENDS Sept.19th


     Last days to register for the University of Iowa's aHUS Family Conference, presented in collaboration with The Atypical HUS Foundation (our new name)!   REGISTER NOW for this the only aHUS conference in the USA to offer 6 medical presentations, plus meet with staff from the rare disease advocacy organizations NORD and Global…


Added by Linda Burke on September 12, 2014 at 11:20pm — No Comments

Global Genes 2014 Rare Patient Advocacy Summit

In the past year, many have been afforded the opportunity to meet other parents, patients, and members of the medical field who have been affected by or involved with aHUS. These meet-ups have been hosted by NORD and Global Genes, and are a collaborative effort launched and supported by The Atypical HUS Foundation (the new name of the Foundation for Children with Atypical HUS).

Global Genes is an organization that was founded in 2009,…


Added by Crystal Ferreira on September 8, 2014 at 1:00pm — No Comments

Sickness in this house....

Today has not been the oldest stayed home today due to running fever and feeling sick to her stomach....I hate when my children don't feel well....I just wish I could have done more for her but I think I got her fever broke finally and she might return to school tomorrow. I must go to dialysis tomorrow for some more "fun" with my loving machine!!! I have not felt that good today either so I am hoping that my youngest or I don't come down with whatever it is she has. Pray for…


Added by Sheila Quinn on September 4, 2014 at 11:43pm — 2 Comments

BIG Advancement for aHUS Patients in ENGLAND!


     In the England, the National Institute for Health and Clinical Excellence (or NICE) Evaluation Committee provides guidance (particularly monitoring cost-effectiveness) for their nationalized heathcare program, the National Health Service (or NHS).   Atypical HUS patients and their families were expecting a ruling from NICE in late February 2014 to recommend eculizumab (Soliris ®) for inclusion as a commissioned drug.  Watching this ruling…


Added by Linda Burke on September 4, 2014 at 10:39pm — No Comments

Suffering in Silence

I am sorry I haven't posted since I joined but I think now is a better time to be able to connect with people like me.....I think I really need it right now. I have been struggling with "suffering in silence" and I don't want to talk to my husband about it because it gets him down and I don't like seeing him like that. I am hoping to connect with some others my age and maybe get some helpful hints to life after aHUS!

Added by Sheila Quinn on September 3, 2014 at 1:49am — 4 Comments

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