The Atypical HUS Foundation

November 2015 Blog Posts (6)

Cyber Shopping Benefits aHUS Research

iGive.comiGive.com     Taking advantage of Cyber Monday deals or doing holiday shopping online?  Sending flowers for the holidays?  Booking holiday, work, or vacation travel?  The Atypical HUS Foundation supports multiple aHUS education and outreach efforts across America and beyond,as well as issuing an annual call to aHUS researchers seeking grants for projects of direct benefit to aHUS…

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Added by Linda Burke on November 29, 2015 at 1:00pm — No Comments

KDIGO Conference in Barcelona - What's the News?

     As patients and caregivers we often wonder what constitutes the best standards of care and monitoring for aHUS patients.  With most diseases or disorders, physicians often rely on ‘best practice’ protocols developed by medical experts, adding further meaning to such standards with education provided by their training,  experience gained in practice, and information supplemented by ongoing/updated professional development (e.g. medical conferences).  When a…

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Added by Linda Burke on November 23, 2015 at 10:30pm — 2 Comments

Global aHUS Experts Meet in Barcelona at KDIGO Conference on Kidney Disease

     Tonight began the KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain.   The opening reception was a Who’s Who in the global world of aHUS researchers and clinicians, so I was both humbled and honored to speak with these world class aHUS experts from nations all over the world to include Italy, France, the UK, Germany, Sweden, the Netherlands, Turkey, India, China, and the UK. View the full…

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Added by Linda Burke on November 19, 2015 at 5:00pm — 5 Comments

Tell the Pharmaceutical Benefits Advisory Committee (PBAC) to Recommend Soliris for Australians with aHUS

Our friends from AHUS Patient Support Group Australia (aPSGA) met with Alex Best from the office of Health Minister Sussan Ley to discuss the policy that will force those who started Soliris back on December 1st, 2014, to stop at the end of November to "see what happens".  The meeting seemed to go well and they asked him to postpone taking people off drug at this time of year since there is less staff available over Christmas and it is not an ideal time…

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Added by Jeff Schmidt on November 18, 2015 at 7:08pm — No Comments

Amazing time in Atlanta this weekend

I had such a great time at the Atlanta Meet up this past weekend!  Got to meet new friends and reconnect with old ones.  It's always so great to hear all the different stories and be impressed once again with how great of a community we have!  Loved hearing Dr. Swinford's medical talk - each doctor explains things just a little bit differently and I learn something new every time.  It was also very cool to hear our very own case manager Kim Chiarella represent One Source and so great to put…

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Added by Phyllis Ann Talbot on November 16, 2015 at 2:38pm — No Comments

Please Help Our Friends in Australia Who Desperately Need Soliris

Our friends in Australia who started Soliris treatments last December 1st are about to lose access to those treatments at the end of November.  Please send their Health Minister Sussan Ley an email like the one below to show your support and to put pressure on.  Feel free to copy the exact email but replace my story (in red) with your personal story.  Your personal story just may be the one that makes a difference!



And please sign the petition that will…

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Added by Jeff Schmidt on November 2, 2015 at 8:00pm — No Comments

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