The Atypical HUS Foundation

DOC TO DOC Directory

 

Sharing the Expertise

Doc to Doc Directory

Professional Connections with Physicians, for Physicians


Physicians wishing to connect with other doctors experienced with the complexities of aHUS' multiple issues and presentations are encouraged contact these volunteer physicians.

Patients, Parents, Caregivers can email this Directory Page as a link to own doctors, share these  physican contact points as option for your care team's medical support. Alternatively, you may send your doctor's contact information for complex issues regarding aHUS diagnosis, treatment, and disease management.

We regret that physicans listed here keep busy schedules, so please respect that time limitations will not allow them to take individual patient phone calls or to answer patient emails.

Gianluigi Ardissino, MD, PhD
Center for HUS Control, Prevention and Management                       
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milano, Italia               
Tel.   +39.02.55032300
M:  +39.335.6065755                  
Email:  ardissino@centroseu.org   
aHUS interests: Diagnosis and treatment of aHUS,  individualization of patient treatment, management of pediatric patients, transplantation in aHUS

Chatchawin Assanasen, MD
Associate Professor and Medical Director
UT Health Science Center
SouthTexas Pediatric Blood and Cancer Ctr
Div. of Hematology/Oncology
Dept. of Pediatrics
UTHSCSA Office:  (210) 743-2316
Fax: (201) 702-8012
1-800-239-9769
Email:  assanasen@uthscsa.edu
aHUS interests: Diagnosis and treatment of aHUS,  participating member of Alexion’s ‘Speaker’s Bureau’ as a physician expert




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

Email:  patrick-brophy@uiowa.edu
aHUS interests: diagnosis and ongoing care of multiple patients, dialysis issues, and transplantation (renal transplant with Soliris)

 

Bradley P. Dixon, MD
Research Assistant Professor of Pediatrics 
Division of Nephrology and Hypertension 
Cincinnati Children’s Hospital Medical Center
Location R.2555, MLC7022  
3333 Burnet Avenue, Cincinnati OH  45229-3039
Voice:  (513) 636-4531   Fax:  (513) 636-7407
Email:  Bradley.dixon@cchmc.org 
aHUS interests: Diagnosis and treatment of aHUS, participating member of Alexion’s ‘Speaker’s Bureau’ as a physician expert  


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

 

Tim Goodship,  MD
Professor of Renal Medicine
Institute of Genetic Medicine
Newcastle University
Central Parkway
Newcastle upon Tyne
NE1 3BZ
UK
Telephone 44 191 241 8632
e-mail tim.goodship@ncl.ac.uk
aHUS interests – genetics, complement and all aspects of diagnosis/treatment



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

 

Paul C. Grimm,  MD

Stanford University School of Medicine,

Dept of Pediatric Nephrology

Lucile Packard Children's Hospital

Medical Director, Pediatric Kidney Transplant Program

Office:   (650) 723-7903

Fax       (650) 736-8423

pgrimm@stanford.edu
aHUS interests: kidney transplantation in very young or complex patients  (both renal transplant with Soliris and combined kidney/liver transplants)

 

Joel Hernandez,  MD
Pediatric Nephrology
Providence Kidney Care

105 West 8th Ave, Suite 7040
Spokane, Washington  99204
Office: (509) 340-0930
aHUS interests: multiple aHUS patients, Soliris

Robert B. Kaplan, MD 
Faculty of the Division of Hematology and Cellular Therapy 
Medical Director, The Hemostasis-Thrombosis Laboratory
The Western Pennsylvania Hospital
The Western Pennsylvania  Allegheny Health System 
Pittsburg, PA  15224   
Office:  (412) 578-4355
Fax: (412) 578-4391
Email:  rbkaplan@wpahs.org 
aHUS interests:  Adult aHUS Patients, Diagnosis and Initial/Long-Term Management, Harnessing Registry Data to Refine Treatment Strategies, Translating Complement Research into Optimization of Clinical Management, Rescuing Renal Grafts in  De Novo Renal Thrombotic Microangiopathy

Mathieu Lemaire, MSc, MDCM, PhD
Staff Nephrologist, The Hospital for Sick Children
Scientist-track Investigator, Cell Biology, Sick Kids Research Institute 
Asst. Professor, Paediatrics, University of Toronto 
Toronto, Canada
Office:  (416) 813-7654 ext. 309419
Email:  mathieu.lemaire@sickkids.ca 
aHUS interests: Genetics, Gene discovery, DGKE-associated aHUS, translational research    

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 x2058
Fax: +1 416 813 6271
Email:  Christoph.lict@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

jeff.saland@mssm.edu

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

Office:  (617) 726-2908
E-mail: asharma5@partners.org

aHUS interests: transplant with Soliris

 

Yu-Min Shen,  M.D.                                                                                                                                       

Associate Professor                                                     

Division of Hematology/Oncology

Blood Disorders Clinic

Seay Biomedical Building, 2nd Floor

2201 Inwood Rd./ Dallas, Texas 75390-8852

Clinic 214-645-HOPE (4673) or 866-648-HOPE (4673)

www.utsouthwestern.org

aHUS interests:  Transitioning from pediatric to adult care settings, long-term dialysis issues

 

Julius Sherwinter, MD
Dunwoody Pediatrics (Nephrology) and the Children's Kidney Center
Office: (770) 394-2358
Atlanta, Georgia
Chief Pediatric Nephrology
Associate Clinical Professor
Children's Healthcare of Atlanta
aHUS interests: infants and Soliris

Andrew M. Siedlecki, MD
Brigham and Women's Hospital, Harvard Medical School
Division of Renal Medicine, Transplant Section
Location:  Harvard Institutes of Medicine
 77 Avenue Louis Pasteur, HIM Rm. 568B
Boston, MA  02115
PH:  (314) 809-2879
Fax:  (617) 582-6167

asiedlecki@partners.org
aHUS interests: diagnosis, presentation during pregnancy and bone-marrow transplantation, treatment and transplant implications, principal investigator of Boston aHUS registry

C. John Sperati, MD, MHS
Johns Hopkins University School of Medicine   
Division of Nephrology 
1830 E Monument St., Rm 416
Baltimore, MD  21205  
Office:  (410) 955-5268
Fax: (410) 367-2258
Email:  jsperati@jhmi.edu
aHUS interests: Adult aHUS patients, diagnosis and treatment, novel diagnostics.  Johns Hopkins principal investigator for the international aHUS registry (Alexion Pharmaceuticals).

 

Christie P Thomas,  M.D.

Professor, Departments of Internal Medicine, Division of Nephrology.

Medical Director, Kidney Transplant Program

University of Iowa Carver College of Medicine

200 Hawkins Drive, SE419H GH

Iowa City, IA 52242

Tel:  319-3564216
Fax: 319-3562381
christie-thomas@uiowa.edu 

aHUS interests:  Adult aHUS Patients, transplant concerns, nephrology and internal medicine issues

 

 
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 volunteer and add their contact information to this 'Doc to Doc' registry may notify linda@atypicalhus.org or info@atypicalhus.org.

 

An Outreach and Education Initiative of www.atypicalhus.org

 

 

 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

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.

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 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...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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