Contact us

The following email addresses are provided for correspondence regarding administrative issues and operations of the Rare Diseases Clinical Research Network. We are unable to answer medical questions.

Do you have a question about a rare disease?

Please use our Find a disease search tool to find the consortium studying your disease.

NCATS Program Director for the RDCRN

Rashmi Gopal-Srivastava, PhD
NCATS Program Director for RDCRN
Email: GopalR@mail.nih.gov

Contact for information about the Data Management and Coordinating Center

Hannah Fitterman
Clinical Research Associate
University of South Florida
Phone: 813-396-9294
Fax: 877-776-2228
Email: Hannah.Fitterman@epi.usf.edu

 

Contacts for information about RDCRN consortia

Advancing Research and Treatment for Frontotemporal Lobar Degeneration Consortium (ARTFL)

Caitlin Glennon
Project Manager
University of California, San Francisco
Phone: 415-476-0662
Email: ARTFL-MGMT@ucsf.edu

Autonomic Disorders Consortium (ADC)

Emily Garland, PhD
Vanderbilt University Medical Center
Phone: 615-936-1748
Email: emily.garland@vanderbilt.edu

Brain Vascular Malformation Consortium (BVMC)

Phillip Evans
Center for Cerebrovascular Research
University of California San Francisco
Phone: 415-206-3689
Email: phillip.evans@ucsf.edu

Brittle Bone Disorders (BBD)

Dianne Dang, BS
Consortium Project Manager
Baylor College of Medicine
Phone: 832-822-1572
Fax: 832-825-1515
Email: diannen@bcm.edu

Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Johnathan Kuhl
Clinical Research Coordinator II
Phone: 513-803-3078
Email: Jonathan.Kuhl@cchmc.org

Melody Hess
Research Coordinator
Phone: 513-636-5540
Email: Melody.hess@cchmc.org

CReATe: Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium

Sumaira Hussain, BS, CCRP
Department of Neurology
University of Miami Miller School of Medicine
Phone: 305-243-8487
Email: projectcreate@med.miami.edu

Developmental Synaptopathies Consortium (DSC)

Rajna Filip-Dhima, MS
Project Manager
Boston Children's Hospital
300 Longwood Avenue
Boston, MA 02115
Email: Rajna.Filip-Dhima@childrens.harvard.edu

Dystonia Coalition

Gina Bell, MPH
Emory University
Phone: 404-727-3381
Email: rbell6@emory.edu

Genetic Disorders of Mucociliary Clearance Consortium (GDMCC)

Beth Godwin
Administrative Assistant
Cystic Fibrosis/Pulmonary Research & Treatment Center
7019 Thurston Bowles Bldg.
CB#7248
Chapel Hill, NC 27599-7248
Phone: 919-966-6780
Fax: 919-966-7524
Email: godwine@med.unc.edu

Inherited Neuropathies Consortium (INC)

Shawna Feely
Phone: 319-384-6362
Email: UICMTClinic@uiowa.edu

Lysosomal Disease Network (LDN)

Brenda Diethelm-Okita
Program Coordinator, Lysosomal Disease Network
Phone: 612-625-1594
Email: dieth001@umn.edu

NEPTUNE: Nephrotic Syndrome Study Network

Chrysta C. Lienczewski
NEPTUNE Clinical Project Manager
Nephrotic Syndrome Study Network
A520C MSRB I, SPC 5657
1150 W Medical Center Dr.
Ann Arbor, MI 48109-5657
Phone: 1-877-NEPTUNE
Email: neptune-study@umich.edu.

North American Mitochondrial Disease Consortium (NAMDC)

Johnston Grier
NAMDC Central Coordinator
Columbia University Medical Center
Phone: 212-342-3671
Fax: 212-305-2887
Email: jg3145@cumc.columbia.edu

Porphyrias Consortium

Hetanshi Naik, MS, CGC
Senior Genetic Counselor & Project Manager
Comprehensive Porphyria Diagnostic & Treatment Center
Icahn School of Medicine at Mount Sinai
One Gustave L. Levy Place, Box 1497
New York, NY 10029                        
Phone: (212) 241-7699
Fax: (212) 426-9065
Email: hetanshi.naik@mssm.edu

Primary Immune Deficiency Treatment Consortium (PIDTC)

Elizabeth Dunn
Consortium Senior Project Manager
UCSF Pediatric A/I BMT
550 16th Street, 4th floor
San Francisco, CA 94143-0434
Phone: 415-502-0203
Fax: 415-514-3372
Email: dunne@peds.ucsf.edu

Rare Lung Diseases Consortium (RLDC)

Brenna Carey, MS, PhD
Program Manager
Division of Pulmonary Biology and Neonatology
3333 Burnet Avenue
Cincinnati, Ohio 45229
Phone: 513-636-8916
Fax: 513-636-3723
Email: Brenna.Carey@cchmc.org

Rare Kidney Stone Consortium (RKSC)

Tammy M. Greenwood, M.S., M.H.A.
Sr. Program Coordinator
Department of Nephrology & Hypertension
Supvr. Senior Research Technologist
Department of Biochemistry & Molecular Biology
Phone: 507-284-8428
Email: greenwood.tammy@mayo.edu

Rett Syndrome, MECP2 Duplication, & Rett-related Disorders Consortium (RTT)

Jane Lane, RN, BSN
Clinical Research Center Project Manager
Rett Syndrome, MECP2 Duplication, and Rett-Related Disorders Consortium
University of Alabama at Birmingham, Civitan International Research Center
Phone: 205-934-1130
Fax: 205-975-6330
Email: jlane@uab.edu

STAIR: Sterol and Isoprenoid Research Consortium

William B. Rizzo, MD
Principal Investigator
University of Nebraska Medical Center
985456 Nebraska Medical Center – MMI 3062
Omaha, NE 68198-5456 - USA
Phone: 402-559-2560
Email: wrizzo@unmc.edu

Jean-Baptiste Roullet, PhD
Administrative Director
Washington State University College of Pharmacy
412 E. Spokane Falls Blvd.
Spokane, WA 99202-2131 - USA
Phone: 509-358-7666
Email: j.roullet@wsu.edu

Urea Cycle Disorders Consortium (UCDC)

Jennifer Seminara, MPH, CCRP
Clinical Research Program Manager
Urea Cycle Disorders Consortium
Children's Research Institute
Children's National Health System
111 Michigan Avenue, NW
Washington, DC 20010
Phone: 202-306-6489
Email: jseminar@childrensnational.org

Vasculitis Clinical Research Consortium (VCRC)

Carol McAlear, MA
Project Manager
Phone: 781-321-4567
Email: cmcalear@upenn.edu

Peter Merkel, MD, MPH
Principal Investigator
University of Pennsylvania
8th Floor Penn Tower
3400 Spruce Street
Philadelphia, PA 19104
Email: pmerkel@upenn.edu