The following email addresses are provided for correspondence regarding administrative questions and operations of the Rare Diseases Clinical Research Network. We are unable to answer medical questions.
Please contact the rare diseases research group studying the specific rare disease. If you do not know the rare diseases research group, you can find out with our rare disease search tool.
Tiina Urv, PhD
NCATS Program Director for RDCRN
Email: urvtiin@mail.nih.gov
Cameron Hainline
Clinical Research Associate
University of South Florida
Phone: 813-396-2690
Email: Cameron.Hainline@epi.usf.edu
Caitlin Glennon
Project Manager
University of California, San Francisco
Phone: 415-476-0662
Email: ARTFLMGMT@ucsf.edu
Emily Garland, PhD
Vanderbilt University Medical Center
Phone: 615-936-1748
Email: emily.garland@vanderbilt.edu
Phillip Evans
Center for Cerebrovascular Research
University of California San Francisco
Phone: 415-206-3689
Email: phillip.evans@ucsf.edu
Dianne Dang, BS
Consortium Project Manager
Baylor College of Medicine
Phone: 832-822-1572
Fax: 832-825-1515
Email: diannen@bcm.edu
Heidi Poppendeck
Clinical Research Coordinator II
Phone: 513-803-3078
Email: Heidi.Poppendeck@cchmc.org
Sumaira Hussain
Consortium Project Manager
Department of Neurology
University of Miami Miller School of Medicine
Phone: 844-837-1031
Email: projectcreate@miami.edu
Rajna Filip-Dhima, MS
Project Manager
Boston Children's Hospital
300 Longwood Avenue
Boston, MA 02115
Email: Rajna.Filip-Dhima@childrens.harvard.edu
Adam Kassem
Emory University
Phone: 404-727-3381
Email: akassem@emory.edu
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
Shawna Feely
Phone: 319-384-6362
Email: UICMTClinic@uiowa.edu
Brenda Diethelm-Okita
Program Coordinator, Lysosomal Disease Network
Phone: 612-625-1594
Email: dieth001@umn.edu
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.
Xiomara Rosales, M.D
NAMDC Central Coordinator
Columbia University Medical Center
630 West 168th Street. Room 4-424
New York, NY 10032
Phone: 212-342-2336
Email: xr2126@cumc.columbia.edu
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
Tara Bani- Hashemi, MPH
Consortium Senior Project Manager
UCSF Pediatric A/I BMT
550 16th Street, 4th floor
San Francisco, CA 94143-0434
Phone: 415-476-3875
Fax: 415-514-3372
Email: Tara.Bani@UCSF.edu
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
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
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
Sara Jones
Study Coordinator
University of Nebraska Medical Center
985456 Nebraska Medical Center – MMI 3062
Omaha, NE 68198-5456 - USA
Phone: 402-559-2511
Email: SaraM.Jones@unmc.edu
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
Carol McAlear, MA
Project Manager
Phone: 781-321-4567
Email: cmcalear@upenn.edu
Peter Merkel, MD, MPH
Principal Investigator
University of Pennsylvania
White Building, 5th Floor
3400 Spruce Street
Philadelphia, PA 19104
Email: pmerkel@upenn.edu
