DOC To DOC - Registry
our 'Doc to Doc Registry'
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
Iowa City, Iowa
aHUS interests: diagnosis and ongoing care of multiple patients, dialysis issues, and transplantation
Stuart Goldstein, MD
Pediatric Nephrology
Texas Children's Hospital: Attending Physician, Renal Service:
Medical Director, Renal Dialysis Unit
Houston, Texas
Ph: (832) 824-3363
Fax: (832) 825-3889
renalcenter@texaschildrenshospital.org
aHUS interests: long-term (10yrs+)PD dialysis, hemodialysis, growth issues/growth hormone
Matt Hand, DO
Carrie Gordon, 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 interest: research focused on complement-based renal diseases
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
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. 17th, 2009 at the University of Iowa.Our deepest appreciation for the outstanding efforts of the University of Iowa doctors and lab staff, who enlighted us with information as they created a meaningful and supportive environment for connecting research and aHUS families. We especially appreciate the courtesy extended to aHUS families and their physcians in regard to sharing the information presented at the Oct. 17, 2009 aHUS Conference.
Conference information has been edited and presentation Powerpoints are available to Members of this website and to physicians dealing with aHUS patients .Please contact the director of the Foundation for Children with Atypical HUS, Bill Biermann, via his Member page on this website, to request aHUS Conference Presentations.
Links
Latest Activity
Forum
Dialysis 10 Replies
Started by Phyllis Ann Talbot. Last reply by Cheryl Christine Pallme Biermann Feb 3.
Current research 25 Replies
Started by Joy Lewis. Last reply by Joy Lewis Jan 30.
Soliris 120 Replies
Started by Linda Burke. Last reply by Cheryl Christine Pallme Biermann Jan 29.
Flu vaccinations 23 Replies
Started by Kelly Crumbaker Hubbard. Last reply by Kelly Crumbaker Hubbard Jan 28.
Prayers 34 Replies
Started by Christy. Last reply by lisa ann peterson Jan 21.
Photos
Blog Posts
fistula placement
Posted by Cheryl Christine Pallme Biermann on February 8, 2010 at 6:15pm — 3 Comments
Surgery, clinic, hike - whew busy update!
First - surgery
Well they've gotten Hyde's nephrectomy tentatively scheduled for March 1st. Waiting on the surgeon's scheduler to call back to just confirm that everything is all lined up with the hospital. We will most likely be going in on Feb. 28th in order to be there are ready to go. Not sure of the time yet - will update later. We still haven't decided 100% how we will do the surgery - right now our ur
Posted by Phyllis Ann Talbot on February 8, 2010 at 5:45pm — 2 Comments
Anna's visit to ER
Posted by Svetlana Finley on February 7, 2010 at 7:49pm — 2 Comments
Snowdrops - The Bravest Little Flowers
Spring is a time for those brave little flowers to make their appearance and poke their heads out into this world. We have had the coldest Winter in the UK for 30 years and more Snow is due this week, we are just not used to it and the UK goes into turmoil and everything stops!
When the turf went down on Jacks Grave lots of Snowdrop bulbs were planted, I have always loved Snowdrops and for those few weeks that their little white heads are on show it makes me smile. This will be
… ContinuePosted by Sara Palmer on February 7, 2010 at 2:54pm — 2 Comments
New to this site - 20 month old with ahus
I have a 20 month old son - ashley - who was diagnosed 13 months ago with ahus and lets just say that the last 12 months have been a massive roller coaster ride. Ashley was on PD for 8 months then came off and was doing plasma infusions which did work so went to plasma exchange which is not really working either so now his doc is trying to apply for the trial o… Continue
Posted by Kerri Grey on February 6, 2010 at 9:11am — 6 Comments
Soliris and Paul
Posted by Vicki Ravely on January 30, 2010 at 6:27pm — 6 Comments
Videos
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Added by Stephen Bradford Burke
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MVI 1879
Added by Stephen Bradford Burke
Events
February 13
Saturday
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blood drive for miss chloe
February 13, 2010 from 10am to 3pm – omak cornerstone church
April 17
Saturday
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2nd Annual Hike for Hyde
April 17, 2010 from 9am to 2pm – Sawnee Mountain Preserve Park
About
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 2010 genetic testing and treatment.
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.
Did you know...
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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...
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