Informazioni di contatto per RDCRN gruppi di ricerca sulle malattie rare
Advancing Research and Treatment for Frontotemporal Lobar Degeneration Consortium (ARTFL)
Caitlin Glennon
Project Manager
Università della California, San Francisco
Tel: 415-476-0662
E-mail: ARTFLMGMT@ucsf.edu
Autonomic Disorders Consortium (ADC)
Dott.ssa Emily Garland, MSCI
Vanderbilt University Medical Center
Tel: 615-936-1748
E-mail: emily.garland@vanderbilt.edu
Brain Vascular Malformation Consortium (BVMC)
Phillip Evans
Centro per la ricerca cardiovascolare
Università della California San Francisco
Tel: 415-206-3689
E-mail: phillip.evans@ucsf.edu
Brittle Bone Disorders (BBD)
Dianne Dang, BS
Project Manager del consorzio
Baylor College of Medicine
Tel: 832-822-1572
Fax: 832-825-1515
E-mail: diannen@bcm.edu
Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
Heidi Poppendeck
Coordinatore II della ricerca clinica
Tel: 513-803-3078
E-mail: Heidi.Poppendeck@cchmc.org
CReATe: Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium
Sumaira Hussain
Project Manager del consorzio
Dipartimento di neurologia
Università di of Miami Miller School of Medicine
Tel: 844-837-1031
E-mail: projectcreate@miami.edu
Developmental Synaptopathies Consortium (DSC)
Rajna Filip-Dhima, MS
Project Manager
Boston Children's Hospital
300 Longwood Avenue
Boston, MA 02115
E-mail: Rajna.Filip-Dhima@childrens.harvard.edu
Dystonia Coalition
Adam Kassem
Emory University
Tel: 404-727-3381
E-mail: akassem@emory.edu
Genetic Disorders of Mucociliary Clearance Consortium (GDMCC)
Beth Godwin
Assistente amministrativo
Centro di ricerca e trattamento della fibrosi cistica/polmonare
7019 Thurston Bowles Bldg.
CB#7248
Chapel Hill, NC 27599-7248
Tel: 919-966-6780
Fax: 919-966-7524
E-mail: godwine@med.unc.edu
Inherited Neuropathies Consortium (INC)
Shawna Feely
Tel: 319-384-6362
E-mail: UICMTClinic@uiowa.edu
Lysosomal Disease Network (LDN)
Brenda Diethelm-Okita
Coordinatore del programma, network di malattie lisosomiali
Tel: 612-625-1594
E-mail: dieth001@umn.edu
NEPTUNE: Nephrotic Syndrome Study Network
Chrysta C. Lienczewski
Clinical Project Manager NEPTUNE
Network di studio sulla sindrome nefrosica
A520C MSRB I, SPC 5657
1150 W Medical Center Dr.
Ann Arbor, MI 48109-5657
Tel: 1-877-NEPTUNE
E-mail: neptune-study@umich.edu.
North American Mitochondrial Disease Consortium (NAMDC)
Xiomara Rosales, M.D
NAMDC Coordinatore Centrale
Columbia University Medical Center
630 West 168th Street. Room 4-424
New York, NY 10032
Tel: 212-342-2336
E-mail: xr2126@cumc.columbia.edu
Porphyrias Consortium (PC)
Hetanshi Naik, MS, CGC
Consulente genetico senior e Project Manager
Centro di diagnostica e trattamento comprensivo della porfiria
Icahn School of Medicine at Mount Sinai
One Gustave L. Levy Place, Box 1497
New York, NY 10029
Tel: (212) 241-7699
Fax: (212) 426-9065
E-mail: hetanshi.naik@mssm.edu
Primary Immune Deficiency Treatment Consortium (PIDTC)
Tara Bani- Hashemi, MPH
Project Manager senior del consorzio
UCSF Pediatric A/I BMT
550 16th Street, 4th floor
San Francisco, CA 94143-0434
Tel: 415-476-3875
Fax: 415-514-3372
E-mail: Tara.Bani@UCSF.edu
Rare Lung Diseases Consortium (RLDC)
Dott. Brenna Carey, MS
Responsabile del programma
Divisione di biologia polmonare e neonatologia
3333 Burnet Avenue
Cincinnati, Ohio 45229
Tel: 513-636-8916
Fax: 513-636-3723
E-mail: Brenna.Carey@cchmc.org
Rare Kidney Stone Consortium (RKSC)
Tammy M. Greenwood, M.S., M.H.A.
Coordinatore del programma Sr.
Dipartimento di nefrologia e ipertensione
Supervisore Tecnico di ricerca senior
Dipartimento di biochimica e biologia molecolare
Tel: 507-284-8428
E-mail: greenwood.tammy@mayo.edu
Rett Syndrome, MECP2 Duplication, & Rett-Related Disorders Consortium (RTT)
Jane Lane, RN, BSN
Project Manager del centro di ricerca clinica
Consorzio della sindrome di Rett, duplicazione MECP2 e disturbi relativi alla sindrome di Rett
Università dell'Alabama a Birmingham, Civitan International Research Center
Tel: 205-934-1130
Fax: 205-975-6330
E-mail: jlane@uab.edu
STAIR: Sterol and Isoprenoid Research Consortium
Sara Jones
Coordinatore dello studio
Università di Nebraska Medical Center
985456 Nebraska Medical Center – MMI 3062
Omaha, NE 68198-5456 - USA
Tel: 402-559-2511
E-mail: SaraM.Jones@unmc.edu
Urea Cycle Disorders Consortium (UCDC)
Jennifer Seminara, MPH, CCRP
Responsabile del programma di ricerca clinica
Consorzio di disturbi del ciclo dell'urea
Children's Research Institute
Children's National Health System
111 Michigan Avenue, NW
Washington, DC 20010
Tel: 202-306-6489
E-mail: jseminar@childrensnational.org
Vasculitis Clinical Research Consortium (VCRC)
Carol McAlear, MA
Project Manager
Tel: 781-321-4567
E-mail: cmcalear@upenn.edu
Peter Merkel, MD, MPH
Sperimentatore principale
Università della Pennsylvania
White Building, 5th Floor
3400 Spruce Street
Philadelphia, PA 19104
E-mail: pmerkel@upenn.edu