The Foundation for Children with Atypical HUS

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, M5G 1X8, Canada

 

Tel. +1 416 813 7654 x 2058

 

Fax. +1 416 813 6271

 

Email. 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

 

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.

 

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.

 

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

 

 

aHUS GLOBAL

 

AUSTRALIA - aPSGA

CANADA- aHUS Canada

FRANCE -SHUa

Syndrome hémolytique et urémique atypique

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

KaTrina Slaughter updated their profile
5 hours ago
Bill Biermann replied to Grace's discussion Potential New Treatments
"The relentless march of technology advancement is amazing.   Who would have thought that our…"
6 hours ago
Len Woodward replied to Grace's discussion Potential New Treatments
"Strangely the tick in the talk would not have triggered a complement reaction in Nathan because of…"
13 hours ago
Cheryl Biermann replied to Grace's discussion Potential New Treatments
"Len, could you paraphrase the tick talk? I can't get it to work. Thanks. Ticks are of special…"
17 hours ago
Grace replied to Grace's discussion Potential New Treatments
"Thanks, Len, for sharing the tick story. Please let us know if you hear of further developments."
23 hours ago
Len Woodward replied to Grace's discussion Potential New Treatments
"Possibly one for the 2020s ! Cheryl makes two very good points. Looks promising though for 29 or so…"
yesterday
Cheryl Biermann replied to Grace's discussion Potential New Treatments
"Woo hoo! Maybe these strains which have been more difficult for Soliris will be more effectively…"
yesterday
Linda Burke posted a blog post

UPDATE: "Potential New Treatment" Forum Launches

      Information about rare disease research and studies can be difficult to unearth, so a key…See More
yesterday

Forum

Potential New Treatments 7 Replies

Started by Grace in Uncategorized. Last reply by Bill Biermann 6 hours ago.

aHUS Family History and North Devon 4 Replies

Started by Len Woodward in Uncategorized. Last reply by Cheryl Biermann on Thursday.

aHUS Regional Meetings 1 Reply

Started by Kerry Waters in Soliris. Last reply by Cheryl Biermann Jul 23.

Hus or aHus? 10 Replies

Started by sandra richard in Uncategorized. Last reply by Linda Burke Jul 14.

aHUS college student - accommodations 3 Replies

Started by Kerry Waters in Uncategorized. Last reply by Kerry Waters Jul 9.

 

Photos

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aHUS Clinical Channel



Blog Posts

UPDATE: "Potential New Treatment" Forum Launches

 

     Information about rare disease research and studies can be difficult to unearth, so a key component of our efforts at www.atypicalhus.org is our commitment to act as a hub connecting information and resources for aHUS patients, families, and caregivers.  Our Atypical HUS Foundation is dedicated to providing an objective, independent network of information…

Continue

Posted by Linda Burke on August 31, 2014 at 8:03pm

Who cares about that Atypical HUS Foundation?

     Well, you should…..if you have any interest in the needs and concerns of aHUS patients, caregivers, and families.   Our foundation is an independent, non-profit organization dedicated to providing information, insight, and support to all those challenged with this rare disease.  We serve patients of all ages and provide a networking hub for aHUS information across the United States and throughout the world, acting as a ‘founding community’ for…

Continue

Posted by Linda Burke on August 28, 2014 at 1:08am — 2 Comments

Ohio was the place to be this weekend!!

Wow! What a weekend at the Columbus Ohio meetup! It was the biggest meetup I have ever been to. I have so much to share and I will very shortly as soon as I get caught up on some rest. But just a quick glimpse into the weekend, global genes had everything planned out perfectly. Dr. Cataland was amazing, approachable and a VERY knowledge doctor in our world of Ahus. Patients of Dr. Cataland are very blessed.



I was blessed to meet so many new Ahus families who came to the meet up as… Continue

Posted by Jill Ziegler on August 24, 2014 at 1:16pm — 7 Comments

Disability

When Cole was first diagnosed in March with Ahus the hospital social worker suggested that I apply for Disability benefits for Cole so I started the process. Last week they called and said his case was being moved to a different office and they were still reviewing it. I was wondering if anyone has experience with social security benefits is it something that is usually granted to kids with Ahus?? Is it worth fighting for?

Posted by Alison Montes on August 20, 2014 at 8:00pm — 3 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 Foundation for Children for Children with Atypical HUS 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 Foundation for Children with Atypical HUS 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.

************************

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 tax-deductible purchase of one or more bracelets will directly fund research to help that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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

Foundation for Children with Atypical HUS
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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