NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
|
|
|
Rare Disease Day Partners!
Government:
FDA Office of Orphan Products Development
NIH Office of Rare Diseases
Social Security Administration
Media Partner:
Discovery Health
Program Partner:
Mystery Diagnosis
Patient Organizations, Professional Medical Societies, and Industry:
About.com Rare Diseases
Access Education
Accord Alliance
ACD Association
Acid Maltase Deficiency Association
Actelion Pharmaceuticals, Inc.
Advancement of Research for Myopathies (ARM)
Alagille Syndrome Alliance
Alexion Pharmaceuticals
Alpha-1 Association
American Academy of Dermatology Association
American Autoimmune Related Diseases Association
American Behcet's Disease Association
American College of Medical Genetics
American Porphyria Foundation
American Self-Help Group Clearinghouse
Amicus Therapeutics
Amyloidosis Foundation
Amyloidosis Support Groups
Androgen Insensitivity Syndrome Support Group USA
Angelman Syndrome Foundation
Aplastic Anemia & MDS International Foundation
Atlanta Judicial Circuit Probation
Aton Pharma, Inc.
Australian Lung Foundation
Australian Paediatric Surveillance Unit
Autoimmune Information Network
Barth Syndrome Foundation
Beyond Batten Disease Foundation
BIO (Biotechnology Industry Organization)
BioMarin Pharmaceutical Inc.
Blane Foundation
British Paediatric Orphan Lung Diseases (BPOLD)
C.A.R.E.S. Foundation
Caregivers of New Jersey
Caring for Carcinoid Foundation
Celgene Corporation
Center for Business Intelligence (CBI)
Centric Health Resources
Charcot-Marie-Tooth Association
Children's Rare Disease Network
Chinese Rare Disease Organization
Chordoma Foundation
Chromosome Disorder Outreach, Inc.
CJD Aware!
Cicatricial Alopecia Research Foundation
CLIMB National Information Centre for Metabolic Diseases
Cornelia de Lange Syndrome Foundation
Cushing's Support and Research Foundation
Cutaneous Lymphoma Foundation
Cystinosis Foundation
Cystinosis Research Network
Cytogenomics and Molecular Pathology, Washington University School of Medicine, St Louis.
Dandy-Walker Alliance
DebRA of America, Inc.
Desmoid Tumor Research Foundation
Drewstock, Inc.
Dysautonomia Foundation, Inc.
Dystrophic Epidermolysis Bullosa Research Association of Canada
ECD Global Alliance
Ehlers-Danlos National Foundation
Ehlers-Danlos Network C.A.R.E.S. Foundation
Emory University Genetics Laboratory
Engage Health, Inc.
Errant Gene Therapeutics
Fabry Support and Information Group
Fagan Center for Communication
Family Support Center of New Jersey
FoldRx Pharmaceuticals, Inc.
Foundation for Ichthyosis and Related Skin Types, Inc.
Friends of Sammy-Joe Foundation
GARD (Genetic and Rare Diseases Information Center, NIH)
Genzyme Corporation
Hannah's Hope for Giant Axonal Neuropathy, Inc.
Hayden's Hope for FOP Research
Helping Hands Club, Massasoit Community College
Hemophilia Federation of America
HHT Foundation International
Hide and Seek Foundation for Lysosomal Disease Research
Hidradenitis Suppurativa Foundation, Inc.
Histiocytosis Association of America
HS-USA
Hunter's Hope Foundation
Hyperion Therapeutics, Inc.
IDEA League
IDM Pharma
Illinois Department of Public Health, Genetics Program
Incontinentia Pigmenti International Foundation
Infant Botulism Treatment and Prevention Program, California Department of Public Health
INO Therapeutics, Inc.
Internationial Castlemans Disease Organization
International Costello Syndrome Support Group
International Cystinuria Foundation
International FOP Association
International Rett Syndrome Foundation
International WAGR Syndrome Association
Janine Sarcoidosis Outreach Foundation
Jordanian Association for Healthy Education
Kennedy's Disease Association
Klippel-Trenaunay Support Group
LAM Treatment Alliance
Lymphangiomatosis Foundation
Lymphangiomatosis & Gorham's Disease Alliance
Lymphatic Research Foundation
Malignant Hyperthermia Association of the United States
Manton Center for Orphan Disease Research, Children's Hospital Boston
Mastocytosis Society
Mastokids.org
MdDS Balance Disorders Foundation
MDS Foundation
Melorheostosis Association
MHE Research Foundation
Moebius Syndrome Foundation
Myocarditis Foundation
Myositis Association
Narcolepsy Network, Inc.
National Adrenal Diseases Foundation
National Ataxia Foundation
National Coalition for Health Professional Education in Genetics (NCHPEG)
National Lymphedema Network
National Marfan Foundation
National Meningitis Association
National MPS Society
National Neutropenia Network
National Niemann-Pick Disease Foundation
National Tay-Sachs & Allied Diseases Association (NTSAD)
National Urea Cycle Disorders Foundation
North American Malignant Hyperthermia Registry
NPS Pharmaceuticals
Nutra Pharma Corp.
Optherion Inc.
Oregon Health & Science University Rare Disorders Research Consortium
Organic Acidemia Association
Orphan's Dream Foundation
OVATION Pharmaceuticals
Oxalosis and Hyperoxaluria Foundation
Palo Alto Investors
PCD Foundation
People Inc.
Platelet Disorder Support Association
PMD Foundation
PMP Pals' Network
Prader-Willi Syndrome Association
Program for Neurodevelopmental Function in Rare Disorders (NFRD), University of North Carolina
Progression BioSciences
Pulmonary Hypertension Association
Raptor Pharmaceuticals
Reflex Sympathetic Dystrophy Syndrome Association
Regeneron
Rubinstein-Taybi Syndrome Support Group
Sarcoidosis Networking Association
Shire Pharmaceuticals
Shwachman Diamond Syndrome Foundation
Sickle Cell Cure Foundation
Sigma-Tau Pharmaceuticals, Inc.
Siren Interactive
Spastic Paraplegia Foundation
Spinal Cord Tumor Association
Stanford University Medical Center ALS Clinic
STARS US
Stiff Person Syndrome Association
Stiffman Syndrome Blog (Debbie Richardson)
Sturge-Weber Foundation
Sydney (Australia) Children's Hospital: Dr. Michael Brydon
Syndromes Without A Name USA
Tarlov Cyst Disease Foundation
The M.O.R.G.A.N. Project
TNA, The Facial Pain Association
Trimethylaminuria Foundation
Trisomy 18 Foundation
United Pompe Foundation
Uplifting Athletes
Vasculitis Foundation
VHL Family Alliance
ViroPharma Inc.
Walk a Mile in My Shoes Campaign, EB Awareness
WE MOVE
Werathah Web Site for Genetics Education: Saudi Arabia
Wilson Disease Association
XLH Network
|
