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

Bone Marrow Failure Disease Consortium (BMFDC)

Kathleen Weaver
The Myelodysplastic Syndromes Foundation
Bone Marrow Failure Disease Consortium (BMFDC)
36 Front Street PO Box 353
Crosswicks, NJ 08515
Phone 609-298-0342
E-mail: KWeaver@mds-foundation.org

Christin Engelhardt
Aplastic Anemia & MDS International Foundation
Bone Marrow Failure Disease Consortium (BMFDC)
P.O. Box 613
Annapolis, MD 21404
Phone: 410-867-0242
Fax: 410-867-0240

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

Cholestatic Liver Disease Consortium (CLiC)

Emily Watson, Program Department
American Liver Foundation

Cholestatic Liver Disease Consortium (CLiC)
American Liver Foundation
75 Maiden Lane
Suite 603
New York, NY 10038
Phone: 212-668-1000 x141
E-mail: EWatson@liverfoundation.org

Cindy Hahn
President
Alagille Syndrome Alliance
Cholestatic Liver Disease Consortium (CLiC)
10500 SW Starr Drive
Tualatin, OR 97062
Phone: 503-885-0455
E-mail: alagille@earthlink.net

Rare Genetic Steroid Disorders Consortium (RGSDC)

Suzanne Levy
Acting Executive Director
CARES Foundation, Inc.
(Congenital Adrenal hyperplasia Research, Education and Support)
Rare Genetic Steroid Disorders Consortium (RGSDC)
2414 Morris Ave., Suite 110
Union, NJ 07083
Office: 973-912-3895
Fax: 973-912-8990
E-mail: suzanne@caresfoundation.org

Heather Nagy
National Adrenal Diseases Foundation
Rare Genetic Steroid Disorders Consortium (RGSDC)
505 Northern Blvd.
Great Neck, NY 11021
Phone: 516-487-4992
E-mail: hnagy@columbus.rr.com

Rare Lung Disease Consortium (RLDC)

Colleen M. Morrone
Pulmonary Alveolar Fibrosis Foundation Rare Lung Disease Consortium (RLDC)
Pulmonary Fibrosis Foundation
1332 N. Halsted St. Suite 201
Chicago, Illinois 60622
phone: 312-587-9272
fax: 312-587- 9273
E-mail: Colleen.Morrone@papfoundation.org

Rare Thrombotic Diseases Consortium (RTDC)

Joan Young
Platelet Disorder Support Association
Rare Thrombotic Diseases Consortium (RTDC)
P. O. Box 61533,
Potomac, MD 208591
Phone: 301-294-5967
Fax: 301-294-3125
E-mail: pdsa@pdsa.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@juno.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