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.

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:   aHUS interests: Diagnosis and treatment of aHUS,  individualization of patient treatment, management of pediatric patients, transplantation in aHUS

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

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
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,  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

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
aHUS interests: Adult aHUS patients, diagnosis and treatment, novel diagnostics.  Johns Hopkins principal investigator for the international aHUS registry (Alexion Pharmaceuticals).

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 or 



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.

YouTube Channel of The Atypical HUS Foundation

Rare Disease Day videos, U of Iowa Conference Videos, Patient and Family Videos, MORE

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




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Kidney Kids - Resource Center

Send a Virtual Pearl Bracelet

Latest Activity

Barbara Farcher is attending Linda Burke's event

aHUS Family Conference - IOWA at U of Iowa campus, and Iowa City Sheraton Hotel

November 4, 2016 at 12pm to November 6, 2016 at 12pm
The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference, in conjunction…See More
Linda Burke left a comment for Erin Schooley
"Welcome, we hope you find this site to be a source of information and support.  Please check…"
Oct 14
Erin Schooley is now a member of The Atypical HUS Foundation
Oct 14
Linda Burke replied to Becki Cheadle's discussion Atypical HUS and illness
"Hi Becky, I'm sorry to hear that your daughter is having these issues, and can understand your…"
Oct 14
Sarah Woollard and Barbara Farcher are now friends
Oct 12
Becki Cheadle posted a discussion

Atypical HUS and illness

Hi I wonder if anyone can help me. My 5 year old daughter has been diagnosed with atypical hus…See More
Oct 10
Madeleine Lekas commented on Madeleine Lekas's blog post Immune System Boosters
"Thanks Cheryl, Izzy is taking Florastar, purchased from Costco, every day.  I will also move…"
Oct 6
Cheryl Biermann commented on Madeleine Lekas's blog post Immune System Boosters
"I've found Dieticians are a great help.  There are dietary issues with any renal failure,…"
Oct 6


Atypical HUS and illness 1 Reply

Started by Becki Cheadle in Soliris. Last reply by Linda Burke Oct 14.

Soliris and excruciating leg pain

Started by Cristian Arias in Soliris Sep 27.

Low Hemoglobin 4 Replies

Started by Betsy Pennington in Soliris. Last reply by Betsy Pennington Sep 5.

aHUS Family History and North Devon 7 Replies

Started by Len Woodward in Uncategorized. Last reply by Len Woodward Aug 28.

ADULTS with aHUS 188 Replies

Started by Linda Burke in Uncategorized. Last reply by Robert Kaplan May 1.


aHUS Awareness Day 2016 - Global Patient's Voice

International Video cf aHUS Patients & Caregivers - Rising above aHUS Special thanks to Jeff Schmidt for this project highlighting and raising voices in unison.


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Atypical HUS Clinical Channel

Blog Posts

Immune System Boosters


Has anyone taking Soliris found any typical methods of immune boosting, ie avoiding gluten, helpful?  My 11 year old daughter is on a bi-weekly dose of Soliris and spikes fevers intermittently which then require heavy doses of antibiotics along with a trip to the hospital.  I hate to cause her any more discomfort, but I was wondering if any one had found any homeopathic ways to boost the immune system while on Soliris.



Posted by Madeleine Lekas on September 11, 2016 at 8:04pm — 4 Comments

aHUS Awareness Day 2016 - Info & Resources

2016 aHUS Awareness Day - 24 September

Information & Resources

     The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease…


Posted by Linda Burke on August 29, 2016 at 10:00am

aHUS Awareness Day - 24 Sept 2016

     24 September 2016 will mark the 2nd annual world aHUS Awareness Day.  Patient organizations from around the world, in collaboration as the aHUS Alliance, have issued a press release providing details within an PRNnewswire,

From the 2016 August 24 Press Release:

"The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and…


Posted by Linda Burke on August 24, 2016 at 7:50am

aHUS Alliance Global Video Project for aHUS Awareness Day, September 24, 2016

(Updated August 9, 2016 - new coloring page added)

The second annual aHUS Awareness Day is coming up fast.  The world will join together on September 24, 2016 to raise awareness for aHUS.  The global theme for aHUS Awareness Day this year is ‘Rise above aHUS’.   

The global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the…


Posted by Jeff Schmidt on August 3, 2016 at 3:00pm


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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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