Primary Hyperoxaluria


Focus Group

Dawn S. Milliner, MD. (Principal Investigator) | bio | Mayo Clinic, Rochester, MN

Liz Lorenz, MD | Mayo Clinic, Rochester, MN

John Lieske, MD | Mayo Clinic, Rochester, MN

Hatem Amer, MD | Mayo Clinic, Rochester, MN

Peter Harris, PhD | Mayo Clinic, Rochester, MN

Candice Granberg, MD | Mayo Clinic, Rochester, MN

Craig Langman | Northwestern University / Lurie Children's Hospital of Chicago, Chicago, IL

Ellen Brooks, PhD | Northwestern University / Lurie Children's Hospital of Chicago, Chicago, IL

Ross Holmes, PhD | University of Alabama, Birmingham, AL

Michelle Baum, MD | Boston Children's Hospital, Boston, MA

Michael Somers, MD | Boston Children's Hospital, Boston, MA

Prasad Devarajan, MD | Cincinnati Children's Hospital Med Center, Cincinnati, OH

Elizabeth Harvey, MD | Hospital for Sick Kids, Toronto, Canada

Lisa Robertson, MD | Hospital for Sick Kids, Toronto, Canada

Julie Olson, RN (Study Coordinator) | Mayo Clinic, Rochester, MN

Barbara M Seide (Study Coordinator) | Mayo Clinic, Rochester, MN

Alicia Meek (Study Coordinator) | Mayo Clinic, Rochester, MN

 

Contact Information:


Mailing address for records/paperwork:
Mayo Clinic
200 First Street SW
Rochester, MN 55905
Mayo Clinic Hyperoxaluria Center Ei-SL 33

Email: hyperoxaluriacenter@mayo.edu
Phone: 800-270-4637
Fax: 507-255-0770



Facebook:

http://www.facebook.com/hyperoxaluria

 

Advocacy Organization

What's New?

Save the Date:

RKSC meeting ASN 2013

The RKSC will host their annual meeting at the 2013 ASN in Atlanta, Georgia on Saturday, November 9th at 12:45-1:45 EST. For additional details contact Tammy Evans:  evans.tamara@mayo.edu

11th International Primary Hyperoxaluria Workshop & Patient Meeting

Chicago, IL
June 27-29, 2014
- Details to follow


2013 OHF Patient Day Meeting at Mayo Clinic

June 8, 2013 RKSC and OHF (Oxalosis and Hyperoxaluria Foundation) hosted a PH and Dent disease Patient Day at the Mayo Clinic in Rochester, MN.  The meeting included presentations on both diseases by Mayo Clinic physicians and OHF reported on the importance of Patient Advocacy Groups being involved with the RKSC and also with research and not only fund raising but also with disease awareness.
After the meeting we had a very successful turn out for the "OHF Walk for Kidneys”! Everyone had a great time.

How Can I Participate?



  • Join the PH Registry!  The Registry is one of the easiest ways for patients to help and the Registry is also one of our most important tools to learn more about PH.  We encourage all PH patients to join the PH Registry. 

  • To see some of what we are learning from the PH Registry click here

  • For more information on this study contact the RKSC PH Study Coordinators at:  hyperoxaluriacenter@mayo.edu  or 800-270-4637

  • Sign up for the Patient Contact Registry on the Rare Diseases Clinical Research Network (RDCRN) site.  RKSC will be posting news and updates on the RDCRN site.  RDCRN will also be updating patient information on this site and patients are encouraged join the RDCRN Contact Registry to stay informed about upcoming news: http://rarediseasesnetwork.epi.usf.edu/RKSC/register/index.htm
  • Support the Oxalosis and Hyperoxaluria Foundation (OHF). This is the only organization in the world dedicated to improving the care and treatment and finding a cure for oxalosis, PH and related stone diseases.  Website: www.ohf.org  or 800-643-8699

  • Participate in other research studies of PH: Contact the Study Coordinators and they will assist you in signing up for the studies that are open for enrollment:  hyperoxaluriacenter@mayo.edu  or 800-270-4637

 

 

Disease Information

Disease Information for Patients

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