Rare Disease Day
DOC To DOC - Directory
Sharing the Expertise-
our 'Doc to Doc Directory'
Physicians wishing to connect with other doctors experienced with the complexities of aHUS' multiple issues and presentations may contact:
Patrick Brophy, MD
University of Iowa
Pediatric Nephrology, Dialysis & Transplantation
Office: (319) 384-3090
Fax: (319) 384-3050
U of Iowa Heath Care
(319) 356-7249
Iowa City, Iowa
patrick-brophy@uiowa.edu
aHUS interests: diagnosis and ongoing care of multiple patients, dialysis issues, and transplantation (renal transplant with Soliris)
Stuart Goldstein, MD
University of Cincinnati College of Medicine
Division of Nephrology and Hypertension &
The Heart Institute
Director, Center for Acute Care Nephrology
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue
MLC 7022
Cincinnati, Ohio 45229
Phone: 513-636-2209
Fax: 513-636-7407
E-mail: stuart.goldstein@cchmc.org
aHUS interests: long-term (10yrs+)PD dialysis, hemodialysis, growth issues/growth hormone
Carrie Gordon, MD
Oliver Fremont, MD
Maine Medical Partners Pediatric Specialty Care (Nephrology)
Office: (207) 662-5522
Fax: (207) 662-5526
Portland, Maine
The Barbara Bush Children's Hospital at Maine Medical Center
aHUS interests: multiple aHUS patients, Soliris, dual organ transplant, TRALI incidence with plasmapheresis
Joel Hernandez, MD
Pediatric Nephrology
Sacred Heart Children's Hospital
Spokane, Washington
Office: (509) 474-5445
aHUS interests: multiple aHUS patients, Soliris
Christoph Licht, MD, FASN
Asst. Professor of Paediatrics
Division of Nephrology
The Hospital for Sick Children
Toronto, Canada
Tel: +1 416 813 7654 x 2058
Fax: +1 416 813 6271
email: christoph.licht@sickkids.ca
aHUS interests: research focused on complement-based renal diseases
Carla M. Nester, MD
University of Iowa
Pediatric Nephrology, Dialysis & Transplantation
Office: (319) 353-7335
Fax: (319) 384-9616
U of Iowa Heath Care
(319) 356-1616
Iowa City, Iowa
carla-nester@uiowa.edu
aHUS Interests: diagnosis and ongoing care of both adult and pediatric patients, including the use of eculizumab and transplantation (renal transplant with Soliris)
Jeffrey M. Saland, MD, MSCR Interim Chief of Nephrology, Assistant Professor of Pediatrics
Mount Sinai School of Medicine NewYork, NY 10029
Office: (212) 241-6187
Fax: (212) 426-1972
aHUS interests: Recognition and Initial Management, single or combined liver/kidney transplants
Amita Sharma, MD
Clinical Director
Division of Pediatric Nephrology
Massachusetts General Hospital for Children
E-mail: asharma5@partners.org
aHUS interests: transplant with Soliris
Julius Sherwinter, MD
Dunwoody Pediatrics (Nephrology) and the Children's Kidney Center
Office: (770) 394-3458
Atlanta, Georgia
Chief Pediatric Nephrology
Associate Clinical Professor
Children's Healthcare of Atlanta
aHUS interests: infants and Soliris
We deeply appreciate the generosity of the physicians above, who have graciously volunteered to share their aHUS expertise and experiences. We extend a warm welcome to all physicians or researchers with aHUS case experiences; doctors wishing to add their contact information to this 'Doc to Doc' registry may notify linda@atypicalhus.org
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Regarding Soliris
Patients, Physicians, and Parents may contact the Medical Information Department of Alexion Pharmaceuticals, Inc at 1.888.SOLIRIS (765-4747)
Technical infomation about Soliris is available in our Forum 'How Soliris Works' courtesy of www.rxlist.com
'c5 Functional Assay' information is available through:
*Mayo Clinic
mayomedicallaboratories.com
Test Number: Unit Code 83392
1-800-533-1710
*National Jewish Hospital
1-800-550-6227 or 303-398-1541
Physicians formulating letters seeking insurance coverage of Soliris therapy to maintain aHUS patient's renal grafts can request the Foundation's helpful template. Please email linda@atypicalhus.org with your office/hospital contact info.
Parents, please have your child's doctor utilize the physician contact data above if you feel your child would benefit from a 'doc to doc' consultation.
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The Atypical HUS CONFERENCE was held on
Oct. 8th, 2011 at the University of Iowa.
We hope to soon share the latest in aHUS research and information, presented by top investigators and doctors. Currently (11/28/11) we are awaiting access to video from this aHUS family conference.
FMI- Please contact the director of the Foundation for Children with Atypical HUS, Bill Biermann, via his Member page on this website or at bbiermann@premier-ks.com .
Links
atypicalhus.50megs.com
Univ. of Iowa Genetic Testing
NORD/Eurordis Global aHUS Site,
5 languages available at
http://www.rarediseasecommunities.org
Visit Children's Rare Disease Network
Latest Activity
Cheryl Biermann replied to Linda Burke's discussion 'Soliris'
We've seen it! People working with us sent the link last week, and it is wonderful, I…
Sarah Brewer updated their profile
Sarah Brewer commented on Sarah Brewer's video
Another news station, KXLY, did another version of the story…
Sarah Brewer replied to Linda Burke's discussion 'Soliris'
Sarah Brewer replied to Linda Burke's discussion 'Soliris'
Forum
Soliris 279 Replies
Started by Linda Burke in Soliris. Last reply by Cheryl Biermann 3 hours ago.
UK aHUS Patients 33 Replies
Started by Lisa Barker in Soliris. Last reply by Len Woodward on Friday.
Seminar at House of Parliament Jan 17th 7 Replies
Started by Lisa Barker in Soliris. Last reply by Cheryl Biermann Jan 20.
Taking the dread out of the hospital visits 1 Reply
Started by Cheryl Biermann in Soliris. Last reply by debbie thelwell Jan 18.
Is there such a thing as "Atypical HUS Free" or "Remission periods" 8 Replies
Started by Bill Biermann in Soliris. Last reply by Cheryl Biermann Jan 18.
Photos
Blog Posts
Anna's update
Svetalan told me yesterday that Anna appeared to be getting better and they were just waiting for some labs, things seemed to be semi normal with them being watchful. Last night, however, Anna had such severe back and stomack pains so they took her to their local hospital and waited four hours. The only thing they did was to suggest vicaden. Anna will be seing her nephrologist in the morning.
For those of you who may not know Anna often had back pain associated with her…
ContinuePosted by Cheryl Biermann on January 29, 2012 at 10:00am
Back in the hospital and the 'bad' anniversary
Well - first of all - so sorry for taking SOOO long between updates! Things were rocking along and I honestly forgot about it and then was waiting to do one on a couple of good things coming up but apparently Hyde had other plans :-\.
First things first - we are here at Egleston, were admitted yesterday morning, but hoping this will be a very quick stay ;-). Since I haven't updated in a while - here's what sort of led us here. Hyde has been doing really well,…
Posted by Phyllis Ann Talbot on January 28, 2012 at 10:17am — 2 Comments
Anna Finley's on her way to Portland
Anna's mother reports she is having strange purple spots and that the labs indicate some blood in the urine, they are taking platelet counts and hoping to begin Solaris. Svetlana and her family woul appreciate prayers.
Posted by Cheryl Biermann on January 27, 2012 at 12:29pm
Share your video in support of Rare Disease Day!
Alone we are rare…together we are strong.
It's not just the slogan for the global campaign marking Rare Disease Awareness Day on February 29, 2012. It's also the rallying cry for "SOARING VOICES" a grassroots effort by patients, friends, and families who…
ContinuePosted by Linda Burke on January 25, 2012 at 5:30pm
Events
April 14
Saturday
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4th Annual Hike for Hyde
April 14, 2012 from 9am to 2pm – Sawnee Preserve Park
Videos
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A Rare One
Added by ALPHA MARKETING
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Professor Tim Goodship and aHUS
Added by Rob P
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Living with aHUS in Spain
Added by Rob P
INFORMATIONAL Videos
Soliris® (eculizumab) Approved by FDA for All Patients with Atypical Hemolytic Uremic Syndrome (aHUS)
aHUS and Soliris FDA Approval -- Physician Comments
Larry Greenbaum, M.D. , Ph.D. - Director of Pediatric Nephrology at Emory University and Children's Healthcare of Atlanta
Craig B. Langman, M.D. - Professor of Kidney Diseases and Head of Kidney Diseases, Feinberg School of Medicine, Northwestern University
aHUS Families and Soliris FDA Approval -- Mary Dunkle, NORD
with Comments from: Phyllis Talbot, mother of an aHUS patient and
Bill Biermann, Co-Founder and Director of the Foundation for Children with aHUS
Genetics and aHUS Judith Goodship
Professor Goodship from Newcastle University has been interested in atypical HUS for nearly twenty years.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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.
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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