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RARE-X

RARE-X.

What is Data Collection? 

Data collection is a process to collect information about you and your experience with Dent disease. You have control over your information. You choose who has access to your information. The settings are in your control, able to be changed at any time.  Hopefully, your data will be analyzed by doctors, researchers, or drug developers who can use it to get a faster diagnosis or to better understand Dent disease and how to potentially treat or cure it.

Why Should I Join?

Having all of our Dent data in one place means that information can be shared and analyzed by doctors, researchers, or drug developers who can use it to get a faster diagnosis, or to better understand Dent disease and how to potentially treat or cure it. Additionally, we can help other kidney disease patients by sharing our data with researchers looking at overall kidney health. Our volunteers will not have access to your private medical information.

What is the purpose of the Data Collection Program? 

Short term: the Data Collection Program supports diagnosis, drug discovery, and development. It increases Dent’s visibility as a rare disease and supports other diseases that are also seeking their cure.

Long term: the Data Collection Program will provide important information on specific body systems that may also be impacted by Dent disease over time. This will help others to recognize and treat symptoms which could aid in the treatment of Dent disease.

Our Team

Our Team.

"Alone we can do so little; together we can do so much." – Helen Keller 

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Co-Executive Director

Jennifer Meyer, RN

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Co-Executive Director

Jill Goodrich

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Executive Treasurer

Deb Duarte

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Executive Secretary

Cal Goodrich

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Chair - Medical/Scientific Advisory Board 

Board Member

Dr. Steven Scheinman 

Medical Advisory Board

Medical Scientific Advisory Board.

Steven J. Scheinman, MD

Chair - Medical/Scientific Advisory Board Dent Disease Foundation

Geisinger Medical Center, PA

Adult Nephrology Internal Medicine

Gema Ariceta, MD PhD

Vall d’Hebron Research Institute Barcelona, Spain

Pediatric Nephrology

Lada Beara Lasic, MD

NYU Langone Health, NY

Adult Nephrology

Michelle A Baum MD

Boston’s Children’s, MA

Pediatric Nephrology

Gerard Cantero, PhD

Vall d’Hebron Research Institute Barcelona, Spain

Research Scientist

Félix Claverie-Martin, PhD

Our Lady of Candelaria University Hospital

Santa Cruz de Tenerife, Spain

Research

Molecular Genetics

Lawrence Copelovitch, MD

Children’s Hospital of Philadelphia, PA

Pediatric Nephrology

Monica Duran, PhD

Vall d’Hebron Research Institute Barcelona, Spain

Research

PhD in Dent Disease

Jenny Gallop, PhD
University of Cambridge, UK
Research Scientist
Dent Disease Type 2

 

Anna Greka, MD PhD
Broad Institute, MA
Adult Nephrology
Internal Medicine

 

Rajat M. Gupta, MD
Harvard Medical Center, MA
Genetics
Cardiovascular Medicine

 

Robert Isom, MD
Stanford Healthcare, CA
General Nephrology

 

John Lieske, MD
Mayo Clinic, MN
Adult Nephrology
Internal Medicine

 

Baisong Lu, PhD
Wake Forest Institute of Regenerative Medicine
Winston-Salem, NC
Research
Gene Therapy
Gene Editing

 

Ana Meseguer, PhD
Vall d’Hebron Research Institute Barcelona, Spain
Research
Head, Renal Pathophysiology Group

 

Raoul Nelson, MD PhD
University of Utah Primary Children’s Medical Center
Salt Lake City, Utah
Chair, Pediatric Nephrology

 

David J. Sas, DO
Mayo Clinic, MN
Pediatric Nephrology

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