The Atypical HUS Foundation

Members

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 team.to 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:  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, 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
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

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, MLC 7022

3333 Burnet Avenue

Cincinnati, OH  45229-3039

Voice: (513) 636-4531

Fax: (513) 636-7407

E-mail:  bradley.dixon@cchmc.org

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
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

Pittsburgh, PA 15224

OFFICE: (412)-578-4355

FAX:      (412)-578-4391

rbkaplan@wpahs.org

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
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,  M5G1X8, Canada
PH:  +1 416 813 7654 x2058 
Fax:  +1 416 813 6271

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

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, 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

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) 394-3458
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

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, 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

christie-thomas@uiowa.edu 
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 linda@atypicalhus.org or

info@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 info@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, 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

VIEW 2011 IOWA VIDEOS

aHUS CLINICAL Videos

Topic-Specific Video CLIPS,

2011 Video Clip Library (links)

 

FMI- Please contact website founder Linda Burke (linda@atypicalhus.org ) or the founder of the Atypical HUS Foundation, Bill Biermann,at bbiermann@premier-ks.com .

 

Links

Join Us on Twitter

 

FMI see atypicalhus.net

 

aHUS Genetic Testing

BloodCenter of Wisconsin

Cincinnati Children's CCHMC

Machaon Diagnostics

Univ. of Iowa Genetic Testing- MORL

 

aHUS Videos - Medical Info

 

aHUS CLINICAL Videos  

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 RESOURCES

 

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

Song - A RARE ONE

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

 

aHUS GLOBAL

 

AUSTRALIA - aHUS Australia

CANADA- aHUS Canada

FRANCE -SHUa

Syndrome hémolytique et urémique atypique

INDIA Atypical HUS India

POLAND   Atypowy Zespól Hemolityczno Mocznicowy

SPAIN - ashua

Asociación Síndrome Hemolítico Urémico Atípico

UNITED KINGDOM - aHUSUK 

 

**aHUS GLOBAL WebPage**

RareConnect, sponsored by

NORD and EURORDIS

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

  

 

Rare Disease ADVOCACY

 

EURORDIS

Rare Diseases Europe

 

Global Genes

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

 

NORD

National Organization for Rare Disorders

Rare Disease United Foundation

State-based Rare Disease ADVOCACY

 

 

OTHER

Shopping online?   iGive.com donates to our cause!

iGive.com

 

Kidney Kids - Resource Center

Send a Virtual Pearl Bracelet

Latest Activity

Linda Burke posted a blog post

aHUS Awareness Day - 24 Sept 2016

     24 September 2016 will mark the 2nd annual world aHUS Awareness Day.  Patient organizations…See More
Wednesday
Jen Garceau replied to Betsy Pennington's discussion Low Hemoglobin
"I also have low hemoglobin. In my case, if it falls below a 10.0, then I can get an Aransep shot.…"
Monday
Jen Garceau and Dana M Simone are now friends
Monday
Betsy Pennington posted a discussion

Low Hemoglobin

My husband is on Soliris since May of 2016.  His kidney function has improved enough to get off…See More
Aug 16
Betsy Pennington replied to Len Woodward's discussion aHUS Family History and North Devon
"My husband just got genetic testing results confirmed CFHR3.  His father's family is from…"
Aug 16
Linda Burke left a comment for Betsy Pennington
"Hi Betsy, and welcome.to this site which we hope will be a source of information and…"
Aug 11
Betsy Pennington is now a member of The Atypical HUS Foundation
Aug 11
Cheryl Biermann left a comment for Andrew Lammert
"Welcome, Andrew!  First, let me congratulate you on the birth of your beautiful baby,…"
Aug 10

Forum

Low Hemoglobin 1 Reply

Started by Betsy Pennington in Soliris. Last reply by Jen Garceau on Monday.

aHUS Family History and North Devon 6 Replies

Started by Len Woodward in Uncategorized. Last reply by Betsy Pennington Aug 16.

ADULTS with aHUS 188 Replies

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

To test or not to test? 2 Replies

Started by Tricia in Uncategorized. Last reply by Debbie Griggs Apr 28.

Soliris: Stop or Continue? 2 Replies

Started by Rebecca Redshaw in Soliris. Last reply by Rebecca Redshaw Apr 11.

 

February 29, 2016 RARE DISEASE DAY - Patient's Voice

Video clips of aHUS Patients & Caregivers - in America and Beyond Special thanks to Jeff Schmidt for this project highlighting and raising voices in unison.

Photos

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Atypical HUS Clinical Channel

Blog Posts

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…

Continue

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…

Continue

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

Mimi - per headaches.... I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (…

Mimi - per headaches....

I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (I take cipro for pseudomonas).  When I first started with the headaches, I took Tramdol before my IV.  After awhile, decreased to the point I no longer need it (about 6 months total).  Do keep in mind, I am 60, so may not apply in your case.  I only had the headaches the day /evening after…

Continue

Posted by Judy Trynosky on July 18, 2016 at 8:40pm

Headaches

Hello,

I hope I am posting this correctly.  My 10 year old daughter was diagnosed this year with aHUS.  She was released from hospital at the end of May.  She is currently taking the bi-weekly dose of Soliris and her lab work looks good.  However last week she was diagnosed with strep, even though she's on the small dosage of penicillin each day.  The strep symptoms are almost gone, but she is complaining of chronic headaches.  Is anyone else experiencing chronic headaches, and have…

Continue

Posted by Madeleine Lekas on July 17, 2016 at 8:28pm — 1 Comment

Videos

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INFORMATIONAL Videos

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. 

 
 
 

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 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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