Angelman, Rett, and Prader-Willi Syndrome Consortium (ARPWSC) |
Janalee Heinemann
CPAG Co Chair
Prader-Willi Syndrome Association
Angelman, Rett, and Prader-Willi Syndrome Consortium (ARPWSC)
Director of Research & Medical Affairs
8588 Potter Park Dr., Suite 500
Sarasota, FL 34238
Phone: 800-926-4797
E-mail: jheinemann@pwsausa.org
Eileen Braun
The Angelman Syndrome Foundation
Angelman, Rett, and Prader-Willi Syndrome Consortium (ARPWSC)
Executive Director
4255 Westbrook Drive, Suite 216
Aurora, IL 60504
Phone: 800-432-6435
Int'l: 630-978-4245
Fax 630-978-7408
E-mail: ebraun@angelman.org |
Consortium for Clinical Investigation of Neurologic Channelopathies (CINCH) |
Annie Kennedy
Muscular Dystrophy Association
Consortium for Clinical Investigation of Neurologic Channelopathies (CINCH)
Vice President - Advocacy
National Advocacy Office
1025 Connecticut Avenue, NW
Suite 907
Washington, DC 20036
Phone: 202-828-8560
Fax: 202-828-8566
E-mail: akennedy@mdausa.org |
Urea Cycle Disorders Consortium (UCDC) |
Cynthia LeMons, Executive Director
National Urea Cycle Disorders Foundation
Urea Cycle Disorders Consortium (UCDC)
4841 Hill Street
La Canada, CA 91011
Phone: 818-790-2460
Fax: 818-952-2184
E-mail: cindy@nucdf.org |
Vasculitis Clinical Research Consortium (VCRC) |
Joyce A. Kullman
Executive Director
Vasculitis Foundation
Vasculitis Clinical Research Consortium (VCRC)
PO Box 28660
Kansas City, MO 64188
Phone/Fax: 816-436-8211
E-mail: jakullman@vasculitisfoundation.org
Christina Cornell
CPAG Co Chair
Vasculitis Foundation
Vasculitis Clinical Research Consortium (VCRC)
PO Box 28660
Kansas City, MO 64188
Phone/Fax: 816-436-8211
E-mail: scc37@nc.rr.com
Jane Dion
Director
Churg Strauss Syndrome Association
Vasculitis Clinical Research Consortium (VCRC)
PO Box 671
Southampton, Ma 01073-0671
Phone: 413-862-3636
E-mail: jd@cssassociation.org
Edward Becker
Founder, Director
Polyarteritis Nodosa Research and Support Network (PRSN)
Eob44@zoominternet.net
724-625-2495
www.pansupport.org
National Medical Research Foundation (GCA/PMR)
Takayasu's Arteritis Research Association |
National Organization for Rare Disorders (NORD) |
Mary Dunkle
Vice President of Communications
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
Fax: 203-798-2291
E-mail: mdunkle@rarediseases.org |
