The Atypical HUS Foundation


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:

Patients, Parents, Caregivers can email this Directory Page as a link to your care share this option for medical support.

Chatchawin Assanasen, MD
Associate Professor, Med. Dir.
UT Health Science Center
So.Texas Ped Blood & Cancer Ctr
Div. of Hematology/Oncology
Dept. of Pediatrics
UTHSCSA Office:  (210) 743-2316
Fax: )201) 702-8012
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
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, MLC 7022

3333 Burnet Avenue

Cincinnati, OH  45229-3039

Voice: (513) 636-4531

Fax: (513) 636-7407


aHUS interests: Diagnosis and treatment of aHUS, a ‘physician expert’ and member of Alexion’s ‘Speaker’s Bureau’

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
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
Telephone 44 191 241 8632
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
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

Pittsburgh, PA 15224

OFFICE: (412)-578-4355

FAX:      (412)-578-4391

aHUS interests:  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

Christoph Licht, MD, FRCPC, FASN
Associate Professor of Paediatrics, Division of Nephrology
The Hospital for Sick Children
555 University Avenue
Toronto, ON,  M5G1X8, Canada
PH:  +1 416 813 7654 x2058 
Fax:  +1 416 813 6271  
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
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

Office:  (617) 726-2908

aHUS interests: transplant with Soliris

Yu-Min Shen, MD
Associate Professor, Division of Hematology/Oncology
Blood Disorders Clinic
Seay Biomedical Building, 2nd Floor
2201 Inwood Road
Dallas, TX  75390
Clinic:  (214) 645-HOPE  (4673)
or:  (214) 648-HOPE   
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) 394-3458
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
aHUS interests: diagnosis, presentation during pregnancy and bone-marrow transplantation, treatment and transplant implications, principal investigator of Boston aHUS registry

Christie P. Thomas, MD
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
PH:  (319) 356-4216
Fax:  (319) 356-2381 
aHUS interests: Adult aHUS Patients, transplant concerns, nephrology and internal medicine issues.


Physicians specializing in consults for ADULTS with aHUS are listed as volunteers in the 'Doc to Doc Directory' located in the 'Adults with aHUS' resource tab.

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



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

'c5 Functional Assay' information is available through:
*Mayo Clinic
Test Number: Unit Code 83392
*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 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, 2014 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:

SEE the 2014 Mtg. Videos



Topic-Specific Video CLIPS,

2011 Video Clip Library (links)


FMI- Please contact website founder Linda Burke ( ) or the founder of the Atypical HUS Foundation, Bill Biermann,at .



Join Us on Twitter


FMI see


aHUS Genetic Testing

BloodCenter of Wisconsin

Cincinnati Children's CCHMC

Machaon Diagnostics

Univ. of Iowa Genetic Testing- MORL


aHUS Videos - Medical Info



Information about aHUS from globally recognized aHUS researchers and clinicians.

2014 aHUS Family Conference at the University of Iowa


aHUS VideoClip Topics

click here to download the PDF document




aHUS Info & Materials 

 aHUS for Clinicians 

 aHUS Center of Excellence at the University of Iowa

Rare Disease Resource List 

aHUS Apple ibook in Spanish

courtesy of ASHUA


Courtesy of Tricky Britches, in honor of global Rare Disease Day




AUSTRALIA - aHUS Australia



Syndrome hémolytique et urémique atypique

INDIA Atypical HUS India

POLAND   Atypowy Zespól Hemolityczno Mocznicowy

SPAIN - ashua

Asociación Síndrome Hemolítico Urémico Atípico



**aHUS GLOBAL WebPage**

RareConnect, sponsored by


Where all aHUS advocacy groups and individuals are welcome to work together in a collaborative effort toward aHUS education and outreach.



Rare Disease ADVOCACY



Rare Diseases Europe


Global Genes

Raising Rare disease Awareness, Research and Education (R.A.R.E.)



National Organization for Rare Disorders

Rare Disease United Foundation

State-based Rare Disease ADVOCACY




Shopping online? donates to our cause!


Kidney Kids - Resource Center

Send a Virtual Pearl Bracelet

Latest Activity

Debbie Montagnon replied to Linda Burke's discussion ADULTS with aHUS
"I don't feel I know enough about it yet to be able to say as I am only recently diagnosed.…"
5 hours ago
Kamal D Shah replied to Linda Burke's discussion ADULTS with aHUS
"Len, people generally think research is something very distant for them. They don't believe…"
7 hours ago
Len Woodward replied to Linda Burke's discussion ADULTS with aHUS
"It make you think. I have always been surprised how those living with aHUS are very unlikely to…"
7 hours ago
Len Woodward replied to Linda Burke's discussion ADULTS with aHUS
"Wow over 6000 views of this forum so there is considerable interest from adults. I do not suppose…"
7 hours ago
Sarah Gerrand left a comment for Sarah Gerrand
"Hi Linda. Yes Kerri has been fantastic and provided me a lot of information, as does your site.…"
Heather commented on Amy Swarbrick's video

Brody's Journey

"Brody's story is pretty much identical to my daughter's. She was got sick at 11 months…"
Barbara Farcher posted a status
"Have a wonderful event in Orlando!!! How fabulous, hosting our first pediatric event! Can't wait to see the pic's and hear the stories."
Linda Burke updated an event

aHUS Mtgs. - Oct to Dec 2015 at Various

September 18, 2015 at 6pm to December 5, 2015 at 4pm
NORD and Global Genes are hosting aHUS regional meetings.   Hear a presentation by an aHUS medical…See More
Oct 3


ADULTS with aHUS 181 Replies

Started by Linda Burke in Uncategorized. Last reply by Debbie Montagnon 5 hours ago.

aHUS triggered by pregnancy 2 Replies

Started by Katie Castle in Soliris. Last reply by Len Woodward Sep 23.

aHUS Family History and North Devon 5 Replies

Started by Len Woodward in Uncategorized. Last reply by Len Woodward Sep 19.

FH auto antibodies 2 Replies

Started by Anne Bruns in Soliris. Last reply by Cheryl Biermann Sep 4.

ahus Foundation 2 Replies

Started by Crystal Gimenez in Uncategorized. Last reply by Linda Burke Aug 14.


CLICK below for Details!

aHUS Awareness Day throughout the World, and USA Campaign


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aHUS Clinical Channel

Blog Posts

aHUS Regional Meetings, Only a Few Left in 2015!

     As fall begins, new opportunities to learn and connect are still ongoing in the aHUS community across America.  The latest aHUS regional meeting was hosted by NORD in Chicago on Sept. 18-19th, with the highlight being a presentation by aHUS medical expert Dr. Bradley Dixon of Cincinnati Children's Hospital Medical Center.  Dr. Dixon’s presentation was clear and concise, but especially valuable and appreciated was Dr. Dixon’s willingness to answer questions from the…


Posted by Linda Burke on September 27, 2015 at 3:48pm

Sept 24th - Today is international aHUS Awareness Day!

     It’s the 1st ever international aHUS Awareness Day around the world!  September 24, 2015 is marks the inaugural launch as a global day designated to add visibility to those challenged by the very rare disease atypical HUS and sponsored by the aHUS Alliance. 

     Key projects for the 2015 aHUS Awareness Day campaign included:

      * A PRNewswire announcing this special day of recognition for aHUS patients, their issues, and various…


Posted by Linda Burke on September 24, 2015 at 1:30pm

aHUS Awareness Day, September 24, 2015 Outreach Project

Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching.  We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.


For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that…


Posted by Jeff Schmidt on September 18, 2015 at 1:30pm — 3 Comments

Be an aHUS Advocate - Sept 24th is aHUS Awareness Day

     Help make the issues and needs of the aHUS community visible - join others from around the world to send messages that provide insight into the challenges faced by atypical HUS patients.

You alone can best describe the impact of aHUS on your life and your relationships. Who better to explain the many challenges of dealing with aHUS treatment while working, being a parent, or struggling with financial and emotional issue?  Since aHUS is a complex and rare disease,…


Posted by Linda Burke on September 17, 2015 at 10:00am


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aHUS Informational Slideshow

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. 



To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

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

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


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.

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.


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 week window before your custom bracelet is shipped.  In a rush?  Contact 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

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



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