The Atypical HUS Foundation

Featured Blog Posts (4)

aHUS Global Survey for Patents & Caregivers - Launched Rare Disease Day 2016

     The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February).  A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages.  The 2014 poll included questions on common themes familiar…

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Added by Linda Burke on March 8, 2016 at 9:00am — No Comments

Drug Development Overview: aHUS Community Looks for Advancements in 2016

     As 2015 draws to a close, it seems likely that 2016 will bring progress in complement therapeutics development toward clinical use.  Since a hallmark of aHUS is chronic, uncontrolled complement activation, we’re looking forward to what happens in a rapidly moving field which seems promise advancement soon.  (FMI Click Here) As with eculizumab (Soliris ®, from Alexion Pharmaceuticals), we likely will see clinical trials…

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Added by Linda Burke on December 27, 2015 at 9:00pm — No Comments

Doc to Doc Directory - Physicians who Advocate for the BEST CARE for aHUS Patients

Concerned about getting the best care possible for aHUS patients?

If your loved one has aHUS, The Atypical HUS Foundation provides a list of volunteer physicians experienced with aHUS diagnosis, treatment options, and multi-organ issues that may cause complications for the aHUS patient.  Let your doctor know about the Doc…

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Added by Linda Burke on March 26, 2015 at 10:30am — No Comments

aHUS Complications: Potential Impact for Multiple Organs

The topic of aHUS complications has surfaced in multiple commentary, including our website's Forums and blogs that have referred to potential effects of aHUS damage that impact other vital organs and patient health.  Multi-organ involvement is referenced by multiple researchers, and patients/families/medical personnel may access such information via links here as a starting point to further explore the topic.  A new term for multi-organ involvement is "extra renal", to indicate that the…
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Added by Linda Burke on March 15, 2012 at 1:30pm — 15 Comments

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