The Atypical HUS Foundation

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 roster, and their affiliations by clicking here

     Wondering what’s happening tomorrow, with such a fabulous array of great aHUS minds and talents all in one location?  Sharing, learning, and connecting!  After a welcome and overview by KDIGO co-chairs Dr. Richard Smith (University of Iowa) and Dr. Tim Goodship (Newcastle University) the agenda lists five groups by topic, with each topic split into two presentations or brief lectures.  Within these topic groups, one lecture will pertain specifically to aHUS while the other will relate to C3G, short for C3 Glomerulopathy (a new term in 2013 to indicate complement-mediated disease which includes Dense Deposit Disease and a similar sub-type C3GN).   Our interest as aHUS patient organizations will lead me to focus on KDIGO presentations and information related to atypical HUS.

     These opening lectures will center the afternoon discussion Break Out Groups, as conference participants will convene as assigned groups to discuss lists of questions.  This is not only a ‘Controversies Conference’ by title alone.  It’s likely that gray areas in diagnosis, treatment strategies, genetic testing, and patient monitoring will be thoroughly discussed as differing viewpoints and new information is considered. These are:

Renal pathology:  Terry Cook, presenter.  Pathology of aHUS

Clinical Phenotype and Assessment:  David Kavanagh, presenter.  What are the challenges in short-term and long-term patient management?

Genetic Drivers of Disease aHUS:  Marina Noris, presenter.   What can we learn from genetics? Is genetic testing clinically relevant?

Acquired Drivers of Disease:  Véronique Frémeaux-Bacchi, presenter.  aHUS and autoantibodies: Their role in disease and their impact on patient management.

Treatment Strategies:  Fadi Fakhouri, presenter.   aHUS: How should patients be followed long term? Are there options to lifelong Eculizumab?

     Participants flying in from around the globe passed over Spain's majestic mountain ranges, then drove through city streets lined with fruit trees sporting a bountiful crop of small oranges.  From beauty of Spain's natural glories to the wonderful dedication and strength of purpose from these outstanding aHUS experts, it's been an amazing experience so far.  Lofty aspirations are in store for this weekend, as the KDIGO website notes: “The conference also aims to summarize outstanding knowledge gaps and propose a research agenda to resolve standing controversial issues. It is hoped that the deliberations from this conference will inform clinicians of the evidence base for present treatment options and help pave the way for future studies in this area.”  As this KDIGO conference unfolds, we’ll be there to report news of interest to the aHUS community from this conference in Barcelona.

POST CONFERENCE Update:  Additional Information

Dr. Richard Smith (far left) and Dr. Tim Goodship (right):  Co-Chairs of KDIGO Controverseries Conference on Complement-Mediated Kidney Disease, held November 19-21 2015 in Barcelona Spain.  (Representing aHUS Patient Organizations: Linda Burke)

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Comment by Len Woodward on November 23, 2015 at 11:55am

You must be shattered after all that and there will be so much to do on the output of the conference in the future; but in international terms this marks a significant moment in matters aHUS around the world..

Comment by Kamal D Shah on November 20, 2015 at 3:34am

Awesome Linda! Great to have you there!

Comment by Margriet Eygenraam on November 19, 2015 at 10:20pm

Wow, that is such a great experience Linda!! I am a little jealous.......:) Thanks for sharing!!

Have an awesome time!!!

Comment by Phyllis Ann Talbot on November 19, 2015 at 7:35pm

way cool!  try to have some non-AHUS fun while there!

Comment by Donna Kolp on November 19, 2015 at 6:09pm
So awesome, Linda!!!


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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
more factoids...

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