The Atypical HUS Foundation

April 2016 Blog Posts (5)

aHUS Global Poll 2016 - Results Update

      A worldwide survey of aHUS adult patients and pediatric caregivers was launched on Rare Disease Day (29 Feb 2016) and continued through 15 April 2016 to accommodate a rollout of survey translations in 6 languages.     The survey premise was that patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective.  A similar effort was conducted in partnership with RareConnect in 2014, with 214…

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Added by Linda Burke on April 30, 2016 at 11:30am — No Comments

2016 aHUS Family Conference - Register for the Nov. 4-6th Mtg

     The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference**, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel.  Registration is limited, FMI see details at the Eventbrite registration site:   http://ow.ly/4n2v06 .  Questions about aHUS Family Conference?   There is a direct way to “Contact…

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Added by Linda Burke on April 25, 2016 at 3:00pm — No Comments

OMS721: Omeros update re aHUS Clinical Trial

     In a 20 April 2016 press release, the Omeros Corporation has announced initiation of “patient dosing in its OMS721 Phase 2 program in corticosteroid-dependent renal diseases. The Phase 2 clinical trial of OMS721, the company's lead mannan-binding lectin-associated serine protease-2 (MASP-2) inhibitor being developed for complement-related diseases…”

 

     From the Omeros press release, “This new trial expands the company's MASP platform,…

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Added by Linda Burke on April 21, 2016 at 11:30am — No Comments

aHUS Global Survey – Participate Today, ends 15 April

2 DAYS LEFT – All aHUS adult patients and caregivers of pediatric aHUS patients worldwide are invited to participate in the

2016 global aHUS poll at http://ow.ly/YR8JK, survey available in 6 languages.…

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Added by Linda Burke on April 13, 2016 at 9:16am — No Comments

aHUS Global Survey – Update: Info as of April 2, 2016

aHUS Global Survey – Open through 15 April 2016

Share your aHUS journey, survey in 6 languages (for aHUS Patients & Pedi Caregivers):…

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Added by Linda Burke on April 3, 2016 at 1:00pm — No Comments

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