"I'll talk to him and see what he's come up with over the weekend :) "
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, FRCPC, FASN
Associate Professor of Paediatrics
Division of Nephrology
The Hospital for Sick Children
555 University Avenue
Toronto, ON, M5G 1X8, 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.
***************************************
The Atypical HUS CONFERENCE was held on
Oct. 8th, 2011 at the University of Iowa.
We've shared the latest in aHUS research and information, presented by top investigators and clinician wiith video of presentations from this aHUS family conference.
Click below to
VIEW IOWA VIDEOS
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
NORD/Eurordis : see aHUS
PATIENT COMMUNITIES,
5 languages available at
http://www.rarediseasecommunities.org
Visit Children's Rare Disease Network
Latest Activity
lisa ann peterson left a comment for Cheryl Biermann"I don't think he's worried bout insurance I think it's more me. We did have her…"
Svetlana Finley left a comment for lisa ann peterson"Lisa, i contacted Alexion and got Anna registered with them, got all info, talk to my doctor and…"
Cheryl Biermann left a comment for lisa ann peterson"Arrrgh! Why isn't he talking to the docs on this site? You get immunized for…"
lisa ann peterson commented on Dana M Simone's blog post Jack update"Praying for jack and your family"
lisa ann peterson commented on Diane schaller's blog post Stomach aches"My daughter Chloe has had stomach aches since day one and they even make her puke. She has been…"
lisa ann peterson left a comment for lisa ann peterson"Well lil miss had her doctors visit today. We discussed Solaris and we discussed Chloe's…"
Cheryl Biermann posted a blog postMemorial Day Weekend
I hope everyone has a wonderful Memorial Day weekend. This is Bill and I's anniversary week too,…See More
Forum
Soliris 282 Replies
Started by Linda Burke in Soliris. Last reply by Svetlana Finley May 18.
Anti Factor H Antibodies 13 Replies
Started by Michele Haymes in Uncategorized. Last reply by Svetlana Finley May 9.
Check ups 1 Reply
Started by Lannette Yorgason in Soliris. Last reply by Svetlana Finley May 5.
Current research & presentations: for patients and healthcare providers 52 Replies
Started by Joy Lewis O'Brien in Uncategorized. Last reply by Joy Lewis O'Brien Apr 18.
The Future 3 Replies
Started by Donna Kolp in Uncategorized. Last reply by sabrina kiernan Apr 16.
Photos
Blog Posts
Memorial Day Weekend
I hope everyone has a wonderful Memorial Day weekend. This is Bill and I's anniversary week too, so we will be visiting our family members who have moved on to much greener pastures, heaven. It has been 16 years since we lost our oldest son, Billy to a car accident when he was 9. The anniversaries of his birth and death are, of course, really hard on the whole family, but Memorial Day weekend isn't so bad, because we get to celebrate the lives of many. May you all be blessed with the…
ContinuePosted by Cheryl Biermann on May 25, 2012 at 2:09pm
I am doing just fine :D
Hello to all the aHUS families out there!
I know it's been a LONG time since I have been on here, but I have been very, VERY busy. I was hired as a Veterinary Technician at a veterinary clinic in Amherst NY on March 17th :) I am doing well, still getting the hang of things, and I am improving with each passing day. I have become a part of the veterinary team, very quickly, despite my medical situation and my height; they don't judge me in that way. They have been willing to train me…
ContinuePosted by Jessica Olivia Frysz on May 21, 2012 at 2:14pm — 2 Comments
Anna and Soliris
Anna just finished her 4th week Soliris treatment. She is been doing very well, less complains about headaches or any kinda pains (back, knee, tummy) and NO blood and protein in her urine. We start Soliris with her labs been good except her urine and we are glad even for this little thing that we don't need to worry. She will continue to get Soliris for about 6 mo. then we will make decision what will be our next step.
Posted by Svetlana Finley on May 18, 2012 at 11:44am — 1 Comment
Stomach aches
Our 8 year old daughter Devon was recently diagnosed with aHUS on March 5, 2012. She spent 5 weeks at CHOC hospital in Orange County CA. It was an incredibly difficult time as you all could imagine. We feel very blessed that she was diagnosed within the first 24 hour and were/are thrilled with the nephrology and hematology teams. We are still waiting for blood test results to come back from Iowa. They originally told us it would take 6-8 weeks now they are telling us 3-4 months. Does it… Continue
Posted by Diane schaller on May 12, 2012 at 1:42pm — 7 Comments
Events
Videos
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 "aHUS Bootcamp" and "About aHUS" tabs 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.
• • • • • • • • • • • •
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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