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.


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

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

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

 

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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 linda@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. 8th, 2011 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

VIEW IOWA VIDEOS

aHUS CLINICAL Videos

 

FMI- Please contact website founder Linda Burke (linda@atypicalhus.org ) or the founder of the Foundation for Children with Atypical HUS, 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.

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

 

 

OTHER

Shopping online?   iGive.com donates to our cause!

iGive.com

 

Kidney Kids - Resource Center

Send a Virtual Pearl Bracelet

Latest Activity

Margriet Eygenraam commented on Linda Burke's blog post NEW Videos- 2014 aHUS Family Conference Presentations
"Thank you so much for posting these videos. A special thank you to the aHUS Foundation and the…"
17 hours ago
Linda Burke posted a blog post

aHUSUK - Advocacy Efforts yield Increased Access to Soliris in the UK

Great News from aHUSUK, with a message from aHUS researcher Dr. Tim Goodship that reads in…See More
20 hours ago
Len Woodward posted a status
"Jumping for Joy at last the NICE task is finished http://ahusuk.org/message-from-professor-tim-goodship/"
20 hours ago
Linda Burke left a comment for Jaime Romero
"Welcome Jaime, Since your 7 year old son is newly diagnosed in December, you may want to check out…"
yesterday
Jaime Romero is now a member of The Atypical HUS Foundation
yesterday
Linda Burke posted a blog post
Tuesday
Dana M Simone commented on Alyssa Deffenbaugh's blog post aHUS Across America: Your State’s Video Clip Entry
"Linda Burke, I'll make sure you have a frisbee to catch from central MA!"
Sunday
Linda Burke left a comment for Carol A Hughes
"Welcome, Carol We hope that you find this site to be a source of information and support. …"
Saturday

Forum

aHUS triggered by pregnancy 1 Reply

Started by Katie Castle in Soliris. Last reply by Len Woodward Jan 21.

ADULTS with aHUS 153 Replies

Started by Linda Burke in Uncategorized. Last reply by Len Woodward Jan 18.

aHUS After Child Birth 5 Replies

Started by Becca in Soliris. Last reply by Maria Jan 17.

Need some assistance from others 2 Replies

Started by Kerry Waters in Soliris. Last reply by Kerry Waters Jan 11.

Potential New Treatments 18 Replies

Started by Grace in Uncategorized. Last reply by Len Woodward Dec 3, 2014.

 

RARE DISEASE DAY

     

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aHUS Clinical Channel



Blog Posts

aHUSUK - Advocacy Efforts yield Increased Access to Soliris in the UK

Great News from aHUSUK, with a message from aHUS researcher Dr. Tim Goodship that reads in part:

“…. I am delighted that aHUS patients in England will now be able to receive eculizumab when they need it for as long as they need it. This I hope will be a source of great reassurance to them, their families and carers. aHUSUK can take great pride in…

Continue

Posted by Linda Burke on January 28, 2015 at 11:05am

NEW Videos- 2014 aHUS Family Conference Presentations

They're…

Continue

Posted by Linda Burke on January 26, 2015 at 9:30pm — 1 Comment

Our Friends in Ontario, Canada Need Our Help!

Our aHUS friends in Ontario Canada need our help.  Their Health Minister Dr. Eric Hoskins has yet to provide access to Soliris for aHUS patients.  Dr. Hoskins responded to a post I made on his Facebook page by saying he is looking for evidence that Soliris works for aHUS like it does for PNH.  Please help our Canadian friends by sending Dr. Hoskins an email telling him how Soliris has worked for you or your loved one.  If we get enough support we can truly make a difference.  Below is what…

Continue

Posted by Jeff Schmidt on January 20, 2015 at 7:10pm — 4 Comments

aHUS Across America: Your State’s Video Clip Entry

Hello Everyone! My name is Alyssa Deffenbaugh and I am hoping to put together an video for Rare Disease day with all of us aHUS patients.  I am basing my idea on a video that Jimmy Fallon (NBC televsion:  Late Night with Jimmy Fallon) put together during the Superbowl last year – the campaign was called ‘Subs Across America’ and featured Subway Footlong sandwiches.  If sandwich lovers can grab the spotlight, why not not ask the aHUS community to raise Rare Disease Day awareness with…
Continue

Posted by Alyssa Deffenbaugh on January 15, 2015 at 2:56pm — 8 Comments

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 Linda@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 Linda@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 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...

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 $825, and is offered with your gift of $295.

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

  

  
Or you can donate a specific dollar amount-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 Linda@atypicalhus.org

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