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Partners

NORD is proud to be a partner with EURORDIS in sponsoring Rare Disease Day and other initiatives to improve the lives of all people affected by rare diseases.

In addition, NORD salutes the following patient organizations, companies, professional societies and government agencies for their support of Rare Disease Day.

How to become a Partner.

Government

  • FDA Office of Orphan Products Development
  • NIH Office of Rare Diseases
  • Social Security Administration

Patient Organizations, Professional Medical Societies, and Industry

    • 1p36 Deletion Support & Awareness
    • A Better Place Dance and Fitness Studio
    • AbbVie Pharmaceuticals
    • About.com Rare Diseases
    • Accelerate Brain Cancer Cure
    • Accentia Biopharmaceuticals, Inc
    • Access Education
    • Accord Alliance
    • Accredo Health, Inc.
    • ACD Association
    • Aceras BioMedical, LLC
    • Acid Maltase Deficiency Association
    • Achalasia Awareness
    • ACOR (Association of Cancer Online Resources)
    • Acorda Therapeutics
    • Acoustic Neuroma Association
    • Acromegaly Community, Inc.
    • Actelion Pharmaceuticals, Inc.
    • Addison’s Support
    • Additional Kare for Kids, Inc.
    • Adenoid Cystic Carcinoma Research Foundation
    • Adult Polyglucosan Body Disease Research Foundation
    • Advancement of Research for Myopathies (ARM)
    • Advocacy for Patients with Chronic Illness, Inc.
    • Aegerion Pharmaceticals
    • Aegerion Pharmaceuticals
    • Agility Clinical
    • Agios
    • AKU Society of North America
    • Alagille Syndrome Alliance
    • Alexion Pharmaceuticals
    • Allergan
    • Allsup
    • Allyson Whitney Foundation, Inc.
    • Alnylam
    • ALPHA Marketing, Inc.
    • Alpha-1 Association
    • Alpha-1 Foundation
    • Alport Syndrome Foundation
    • ALS Association-Greater Philadelphia Chapter
    • ALS Therapy Development Institute
    • Alstrom Syndrome International
    • Alternating Hemiplegia of Childhood Foundation
    • Alveolar Capillary Dysplasia Association
    • American Academy of Dermatology Association
    • American Autoimmune Related Diseases Association
    • American Behcet’s Disease Association
    • American Brain Tumor Association
    • American College of Medical Genetics
    • American Dystonia Society
    • American MedChem Nonprofit Corporation
    • American Partnership for Eosinophilic Disorders
    • American Porphyria Foundation
    • American Self-Help Group Clearinghouse
    • American Society for Matrix Biology
    • American Syringomyelia and Chiari Alliance Project
    • AmeriFace
    • Amicus Therapeutics, Inc.
    • AMSA UW Wisconsin Chapter
    • Amylin Pharmaceuticals, Inc.
    • Amyloidosis Foundation
    • Amyloidosis Support Groups
    • Androgen Insensitivity Syndrome Support Group USA
    • Angel Flight East
    • Angelman Syndrome Foundation
    • Annett W. Snell Amyloidosis Foundation, Inc.
    • Answering TTP Foundation
    • APBD Research Foundation
    • APCO WorldWide
    • Apex MD
    • Aplastic Anemia & MDS International Foundation
    • Aplastic Anemia And Omid’s Mission Foundation
    • APS Foundation of America, Inc.
    • Arach Friends
    • Arachnoid Cyst Awareness Organization (ACA)
    • Area 23
    • Arizona Hemophilia Association
    • ARPKD/CHF Alliance
    • Asbestos Disease Awareness Organization (ADAO)
    • Ask Me About AIH (Autoimmune Hepatitis)
    • Asklepion Pharmaceuticals, LLC
    • Asociacion Mexicana De Cistinosis AC
    • Association CMTC – Cutis Marmorata Telangiectatica Congenita
    • Association for Creatine Deficiencies
    • Association for Frontotemporal Degeneration AFTD
    • Association for Glycogen Storage Disease
    • Association for the Bladder Exstrophy Community
    • Association of Gastrointestinal Motility Disorders (AGMD)
    • Association of Genetic Support of Australasia Inc
    • Association of Public Health Laboratories
    • Association Shifa des Maladies NeuroMusculaires (ASMNM)
    • Astra Zeneca Pharmaceuticals LP
    • A-T Children’s Project
    • Athena Diagnostics
    • Atlanta Judicial Circuit Probation
    • Aton Pharma, Inc.
    • Audentes Therapeutics
    • Australian Lung Foundation
    • Australian Paediatric Surveillance Unit
    • Autoimmune Information Network
    • Auxilium
    • Avery’s Angels Gastroschisis Foundation
    • Baby Hearts Press
    • Bannari Amman Institute of Technology
    • Barth Syndrome Foundation
    • Basal Cell Carcinoma Nevus Syndrome Life Support Network
    • Batten Disease Support and Research Association
    • Baxter BioScience
    • Bayer Group
    • Bcureful
    • BEECH Australian Community
    • Benign Essential Blepharospasm Research Foundation
    • BensFriends.org
    • Besant Hill School
    • Beth Israel Deaconess Medical Center
    • Beyond Batten Disease Foundation
    • BIO (Biotechnology Industry Organization)
    • BIO Geeks – Science Club
    • BioMarin Pharmaceuticals Inc.
    • Biotest Pharmaceuticals
    • Blane Foundation
    • Boehringer-Ingelheim Pharmaceuticals
    • Boyer’s Organization of Sarcoidosis Sufferers
    • Brace Pharmaceuticals, Inc.
    • BRAIN TRUST: The Healing Exchange
    • Branchio-Oto-Renal Syndrome Awareness
    • BraunSolutions.net
    • Brayden Alexander Global Foundation for Hydranencephaly, Inc. dba Global Hydranencephaly Founation
    • Breath of Hope
    • British Paediatric Orphan Lung Diseases (BPOLD)
    • Building Blocks Pediatrics (North Carolina)
    • Butterflys & Bandages
    • C. Cody Mitro Foundation Inc.
    • C.A.R.E.S. Foundation
    • Cadasil foundation
    • CADASIL
    • Cailyns Parade
    • Canadian Chapter of the National Niemann-Pick Disease Foundation
    • Canadian Org for Rare Disorders CORD
    • Carcinoid Cancer Foundation
    • Carcinoid Information
    • Cardio-Facio-Cutaneous International (CFC)
    • Care-Aware
    • Caregivers of New Jersey
    • Caring for Carcinoid Foundation
    • Caring Hands Sarcoidosis Network of Michigan
    • Casia Organics
    • Castleman’s Awareness & Research Effort
    • Catalyst Pharmaceuticals Partners
    • CBI
    • CDG Family Network
    • Celgene Corporation
    • Center for Business Intelligence (CBI)
    • Center for Ehlers Danlos Syndrome Alliance
    • Center for Rare and Neglected Diseases, University of Notre Dame
    • Central Arizona Rare DIsease Support
    • Central Nervous System Vasculitis Foundation
    • Centric Health Resources
    • Cephalon Inc.
    • Charcot-Marie-Tooth Association
    • Charcot-Marie-Tooth Support Group of Upstate New York
    • Chase the Cure
    • Chediak-Higashi Syndrome Association
    • Chelsea Therapeutics International Ltd
    • Chest Diseases Department, Faculty of Medicine for girls, Al-Azhar University
    • Children Against Hyperinsulinism
    • Children with Spinal Muscular Atrophy Ukraine
    • Children’s Rare Disease Network
    • Children’s Cardiomyopathy Foundation
    • Children’s Craniofacial Association
    • Children’s Gaucher Research Fund
    • Children’s PKU Network
    • Children’s Tumor Foundation
    • China-dolls Care and Support Association
    • Chinese Rare Disease Organization
    • Chordoma Foundation
    • Chordoma Support Group
    • Christian’s Conquest
    • Chromosome 18 Registry and Research Society
    • Chromosome 22 Central
    • Chromosome 9 Disorder Advocates
    • Chromosome Disorder Outreach, Inc.
    • Chronic Granulomatous Disease Association, Inc
    • Chronic-Intractable Pan And You
    • Churg Strauss Syndrome Association
    • Cicatricial Alopecia Research Foundation
    • CISCRP
    • CJD Aware!
    • Clark and Daughtrey Medical Group
    • Cleft Lip and Palate Foundation of Smiles
    • Cleft Palate Foundation
    • CLIMB National Information Centre for Metabolic Diseases
    • Clinical Resource Network
    • Clinigen
    • CLOVES Syndrome Community
    • CMTC-OVM Cutis Marmorata Telangiectatica Congenita
    • CMTUS
    • CNS Foundation
    • Coalition for Heritable Disorders of Connective Tissue
    • Coalition for Pulmonary Fibrosis
    • Cockayne Syndrome Network (a.k.a. Share & Care)
    • Cohen Syndrome Association
    • Cohn & Wolfe
    • Community of Hope
    • Compass Healthcare Marketers
    • Congenital Heart Information Network
    • Congenital Hyperinsulinism International
    • Connective Tissue Oncology Society
    • Connexion Healthcare
    • Consortium of Multiple Sclerosis Centers
    • Contact A Family
    • Corcept Therapeutics
    • Cornelia de Lange Syndrome Foundation
    • Costello Syndrome Family Network
    • Cote Orphan Consulting
    • Council for Bile Acid Deficiency Diseases
    • CRB1.org
    • Creative Control Films
    • Cryoglobulinemia Vasculitis Organization
    • CSL Behring
    • CTI Clinical Trial and Consulting Services
    • Culver City Disability Committee
    • Cure CMD
    • Cure Dercum’s
    • Cure JM Foundation (Juvenile Myositis)
    • CureDuchenne
    • CurePSP Foundation for PSP/CBD and Related Brain Diseases
    • Curing Retinal Blindness Foundation
    • Cushing’s Support and Research Foundation
    • Cutaneous Lymphoma Foundation
    • Cutis Laxa Internationale
    • Cystinosis Foundation
    • Cystinosis Research Foundation
    • Cystinosis Research Network
    • Cytogenomics and Molecular Pathology, Washington University School of Medicine, St Louis
    • Cytokinetics, Inc.
    • Dana’s Angels Research Trust
    • Dandy-Walker Alliance
    • Daniella Maria Arturi Foundation
    • Danielle’s Hope
    • DARA BioSciences
    • Darlington House
    • Daystar for Medically Fragile Infants, Inc.
    • DebRA of America, Inc.
    • Departamento Educacion
    • Department of Orthopaedic Surgery, Thomas Jefferson University College of Medicine
    • Department of Pediatrics, University of Utah
    • Dercum’s Disease Support Group
    • Desmoid Tumor Research Foundation
    • Diplomat Specialty Pharmacy
    • DisabledCincinnati.org
    • Discover Dysautonomia
    • DNA Traits
    • Dompé
    • DonateGames.org
    • Doose Syndrome Epilepsy Alliance
    • Dragonfly Advocacy
    • Dravet Syndrome Foundation
    • Dravet.org
    • Drewstock, Inc.
    • Duchenne Parent Project Italy
    • Duchesnay Inc.
    • Dup15 Alliance
    • Dyax Corp
    • Dysautonomia Foundation, Inc.
    • Dysautonomia International
    • Dystonia Medical Research Foundation
    • Dystrophic Epidermolysis Bullosa Research Association of Canada
    • EB Help
    • ECD Global Alliance
    • EDSers United
    • Ehlers-Danlos National Foundation
    • Ehlers-Danlos Network C.A.R.E.S. Foundation
    • El Hogar
    • Eli Lilly and Company
    • Emily’s Entourage
    • Emory University Genetics Laboratory
    • Encephalitis Global, Inc.
    • Engage Health, Inc.
    • Enmedic clinic
    • Enobia Inc.
    • Epilepsy Foundation
    • Eric D. Davis Sarcoma Foundation
    • Errant Gene Therapeutics
    • Erythromelalgia Association
    • Esophageal Cancer Action Network, Inc.
    • EURORDIS
    • Evangel Temple Assembly of God Special Needs Ministries
    • EveryLife Foundation for Rare Diseases
    • Expedition Awareness
    • Express Scripts
    • Fabry NFDF
    • Fabry Support and Information Group
    • Face 2 Face Foundation, Inc
    • FACES: The National Craniofacial Association
    • Fagan Center for Communication
    • Faith Technologies
    • Families of Spinal Muscular Atrophy
    • Family Caregiver Alliance
    • Family Network TV
    • Family Support Center of New Jersey
    • Family Support Network of North Carolina
    • Fanconi Anemia Research Fund
    • Fat Disorders Research Society, Inc. (fatdisorders.org)
    • Feel Better LLC
    • Feinstein Kean Healthcare
    • Fibromuscular Dysplasia Society of America
    • Fibrous Dysplasia Foundation
    • Fiibro Gal Agency LLC
    • Fiibro Gal Agency LLC
    • Filipiak Chiropractic Center
    • First Response Medical Training
    • FMD Chat
    • FMDSA
    • Foundation Fighting Blindness
    • Foundation for Angelman Syndrome Therapeutics
    • Foundation for Better Health Care
    • Foundation for Children with Atypical HUS
    • Foundation For Ichthyosis & Related Skin Types(F.I.R.S.T.)
    • Foundation for Mitochondrial Medicine
    • Foundation for Prader-Willi Research
    • Foundation for Sarcoidosis Research
    • Foundation of Molecular Medicine
    • Franciscan Institute of World Health
    • FRAXA Research Foundation
    • Freeman-Sheldon Research Group, Inc.
    • Friedreich’s Ataxia Research Alliance (FARA)
    • Friends of Casey
    • Friends of Sammy-Joe Foundation
    • Frontotemporal Lobar Degeneration Association
    • Fundación Colombiana de hipertensión Pulmonar
    • Fundacion de Enfermedades Raras Metabolicas – Ecuador
    • Fundación FOP
    • FUNDACION GIST MEXICO
    • GAMEYOGA
    • GARD (Genetic and Rare Diseases Information Center, NIH)
    • Gastroparesis Patient Association for Cures and Treatments
    • GBS/CIDP Foundation International
    • Gene Giraffe Project
    • Genetic & Rare Disorders Organisation
    • Genetic Alliance
    • Genetic Support Council of Western Australia
    • Genzyme Corporation
    • Georgia Parkinson’s Association
    • Girl Power 2 Cure
    • Gist Cancer Research Fund
    • GIST Support International
    • GlaxoSmithKline plc
    • Global Foundation for Peroxisomal Disorders
    • Global Genes Project
    • Global Hydranencephaly Foundation
    • GlobalEpi Research
    • Glow for Cushing’s
    • Glut1 Deficiency Foundation
    • GLUT1 Transporter Deficiency Syndrome
    • Glycobiology Research and Training Center at the University of California, San Diego
    • GlycoMimetics, Inc.
    • Good Shepherd Medical Center
    • Grupo de Estudos de Doenças Raras
    • Guard & Grow Enterprises
    • Gulf Coast Pain Management
    • Gwendolyn Strong Foundation
    • Hadju-Cheney Syndrome
    • HAE Canada
    • Hageman Foundation
    • Hannah’s Hope for Giant Axonal Neuropathy, Inc.
    • Happy Healthy Kids Day
    • Hayden’s Hope for FOP Research
    • Health4Brands Back Bay
    • Helping Hands Club, Massasoit Community College
    • Hemimegalencephaly Family Support Network
    • Hemophilia Federation of America
    • Hereditary Disease Circle
    • Hereditary Disease Foundation
    • Hereditary Hemorrhagic Telangiectasia HHT Foundation International
    • Hereditary Leiomyomatosis and Renal Cell Cancer Family Alliance
    • Hereditary Neuropathy Foundation
    • Hermansky-Pudlak Syndrome Network
    • HHT Foundation
    • Hide and Seek Foundation for Lysosomal Disease Research
    • Hidradenitis Suppurativa Foundation, Inc.
    • HIKMA Pharmaceuticals
    • Histio Heroes Research Fund
    • Histiocytosis Association of America
    • HJE Enterprise, LLC
    • Holistic Healthcare and Research Centre
    • Hope for Hypothalamic Harmartomas
    • Hospice and Healthcare Communications, LLC
    • Hosur Institute of Technology and Science
    • HPS Group LLC
    • HS-USA
    • Hudson Special Olympics
    • Hugs From Dustyn
    • Hunter’s Hope Foundation
    • Huntington Disease Association
    • Huntington’s Disease Society of America
    • Hydrocephalus Association
    • Hyman, Phelps & McNamara PC
    • Hyperion Therapeutics
    • Hypermobility Syndromes Association
    • Hypoparathyroidism Association
    • I Have IIH
    • I RefuseEBorg
    • IDEA League
    • IDEAS – IsoDicentric 15 Exchange Advocacy and Support
    • IDIS Pharmaceuticals
    • IDM Pharma
    • IKARIA
    • Illinois Department of Public Health, Genetics Program
    • Illumina
    • Immune Deficiency Foundation
    • In Need Of Diagnosis, Inc. (INOD)
    • Incontinentia Pigmenti International Foundation
    • Incyte Corporation
    • Infant Botulism Treatment and Prevention Program, California Department of Public Health
    • Insmed Incorporated
    • Inspired Science and Research
    • Institute for Rare and Neglected Diseases Drug Discovery
    • Institute Pasteur in Tunis
    • Instituto de Medicina Genomica
    • InterMune
    • International Advocate for Glycoprotein Storage Diseases
    • International Association for Food Protein Entercolitis
    • International Association for Food Protein Enterocolitis (IAFFPE)
    • International Castleman’s Disease Organization
    • International Costello Syndrome Support Group
    • International Cystinuria Foundation
    • International Fibrodysplasia Ossificans Progressiva (FOP) Association
    • International Foundation for CDKL5 Research
    • International Myeloma Foundation
    • International Neuroendocrine Cancer Alliance (INCA)
    • International Pemphigus and Pemphigoid Foundation
  • International Rett Syndrome Foundation
  • International WAGR Syndrome Association
  • Intracranial Hypertension Research Foundation
  • Intractable Childhood Epilepsy Alliance (ICE Epilepsy Alliance)
  • Invisible Disabilities Association
  • Invisible Diseases Health Navigation
  • Iowa Ataxia Support Group
  • IPH-NET
  • Iron Disorder Institute
  • Isis Pharmaceuticals
  • ITP Foundation
  • Jack McGovern Coats Disease Foundation
  • Jackson Gabriel Silver Foundation
  • Jacob’s Cure
  • Janet Liso Cancer Foundation
  • Janine Sarcoidosis Outreach Foundation
  • Jazz Pharmaceuticals PLC
  • JBS International, Inc.
  • JCI Productions, Inc. (JCI LIVE AUSTIN television program)
  • Johnson & Johnson Pharmaceuticals
  • Jonah’s Just Begun – Foundation to Cure Sanfilippo Inc.
  • Jordanian Association for Healthy Education
  • Keck Graduate Institute
  • Kennedy Krieger Institute
  • Kennedy’s Disease Association
  • Kezzie Allen Foundation
  • Kidney & Urology Foundation of America
  • KiP Magazine
  • Kleine-Levin Syndrome Foundation
  • Klippel Trenaunay Support Group
  • Klippel-Trenaunay Support Group
  • Lafayette James Foundation
  • LAL Solace, Inc.
  • LAM Treatment Alliance
  • Lapidus Data LLC
  • Les Turner ALS Foundation, Ltd
  • Let Them Be Little X2
  • LGS FOUNDATION
  • Liam’s Land Organization, Inc.
  • Liam’s Lighthouse Foundation
  • Life Raft Group
  • Life Spot
  • Life Technologies
  • Living with Stiff Person Syndrome
  • Living with Trisomy 13 – Patau Syndrome
  • Locks of Love
  • Louisiana 22q support Network
  • Lowe Syndrome Association, Inc.
  • Lubkin Fund for MHE Research
  • Lundbeck Inc.
  • Lung Disease Support Group Inc.(LDSG Inc.)
  • Lymphangiomatosis (LAM) Foundation
  • Lymphangiomatosis and Gorham’s Disease Alliance
  • Lymphatic Research Foundation
  • Lynch Syndrome International
  • Lysosomal Diseases New Zealand
  • Maddi’s Hope (Abernethy Malformation)
  • Maddy Splashes Out RSDS
  • MAGIC Foundation
  • Makrocare Clinical Research
  • Malignant Hyperthermia Association of the United States
  • Many Faces of Moebius Syndrome
  • Marathon Pharmaceuticals LLC
  • MarbleRoad
  • Marcus Gunn Foundation
  • Mark Krueger & Associates, Inc.
  • Mark Morgan CPA, Inc.
  • Mary Payton’s Miracle Foundation
  • Massachusetts Biotechnology Council (MassBio)
  • Massasoit Community College
  • MassBio
  • Mast Therapeutics
  • Mastocytosis Society
  • Mastokids.org
  • M-CM Network
  • MCTD Strong
  • mctdHOPE
  • MdDS Balance Disorders Foundation
  • MDJunction.com Dercum’s Disease Support Group
  • MDS Foundation
  • Mead Johnson Nutrition
  • MEBO Research
  • Medco Health Solutions
  • Medical Imaging Technologies
  • MedicAlert Foundation
  • Medicis Pharmaceutical Corp.
  • Medtronic, Inc.
  • Medunik Canada
  • Melanoma Research Foundation/CURE Ocular Melanoma
  • Melorheostosis Association
  • Mercy Medical Airlift
  • Meritage Pharma, Inc.
  • Mesothelioma Applied Research Foundation
  • MHE and Me
  • MHE Coalition
  • MHE Research Foundation
  • Midwest Women’s Vascular Advocates
  • Milestones for Children
  • Millenium Pharmaceuticals: The Takeda Oncology Company
  • Miracle Flights for Kids
  • Mission City Community Network Health Clinics
  • Mississippi Deaf-Blind Project
  • Mississippi Mended Little Hearts
  • MitoAction
  • MLD Foundation
  • Moebius Syndrome Foundation
  • Moi University
  • Monarch Cares Rare Disease Cooperative
  • mondoBIOTECH
  • MOPIX-TC
  • MPN Advocacy and Education International
  • MPN Research Foundation
  • MPS Jajax A.C.
  • Mucolipodosis Type IV Foundation, Inc. (ML4)
  • Mustang Insurance Agency
  • Myasthenia Gravis Foundation of America, Inc
  • Myocarditis Foundation
  • Myositis Association
  • Myositis Support and Understanding
  • Myotonic Dystrophy Foundation
  • Narcolepsy Network, Inc.
  • Narcolepsy Support Group of San Diego County
  • National Academy of Young Scientists (NAYS)
  • National Adrenal Diseases Foundation (NADF)
  • National Alliance for Thrombosis and Thrombophilia
  • National Alopecia Areata Foundation
  • National Ataxia Foundation
  • National Brain Tumor Society
  • National Coalition for Health Professional Education in Genetics (NCHPEG)
  • National Eosinophilia Myalgia Syndrome Network
  • National Foundation for Ectodermal Dysplasias
  • National Fragile X Foundation
  • National Gaucher Foundation
  • National Hemophilia Foundation
  • National Keratoconus Foundation
  • National Lymphedema Network
  • National Marfan Foundation
  • National Meningitis Association
  • National MPS (Mucopolysaccharidoses/Mucolipdoses) Society
  • National Multiple Sclerosis Society
  • National Neutropenia Network
  • National Niemann-Pick Disease Foundation
  • National Organization for Albinism and Hypopigmentation (NOAH)
  • National Patient Travel Center
  • National PKU Alliance
  • National PKU News
  • National Rehab
  • National Research Centre, Cairo, Egypt
  • National Spasmodic Dysphonia Association
  • National Spasmodic Torticollis Association
  • National Tay-Sachs & Allied Diseases Association (NTSAD)
  • National Tuberous Sclerosis Association
  • National Urea Cycle Disorders Foundation
  • NBIA Disorders Association
  • Nemours Biomedical Research
  • NephroPlus
  • Neuralstem Inc.
  • Neurofibromatosis Network
  • Neurofibromatosis, Inc., Northeast
  • Neuromuscular Disease Foundation
  • New York State Rare Disease Alliance Inc.
  • NewYorkBIO (New York Biotechnology Association)
  • Niños de Hierro A.C.
  • NMO Action
  • NN/LM Pacific Southwest Region
  • NOMID Alliance
  • NORD
  • North American Malignant Hyperthermia Registry
  • North Carolina CRPS/RSD Association
  • Northstream Global Partners
  • Novartis Oncology
  • Novartis Pharmaceuticals
  • Novo Nordisk
  • NPS Pharmaceuticals, Inc.
  • Nutra Pharma Corp.
  • Nutricia North America
  • Oak Factory
  • OHSU
  • OmniaVincit, LLC
  • Onyx Pharmaceuticals Inc.
  • Optherion Inc.
  • Oregon Health & Science University Rare Disorders Research Consortium
  • Organic Acidemia Association
  • ORGANIZATION FOR RARE DISEASES INDIA
  • Orphan Europe
  • Orphan Therapeutics
  • Orphan’s Dream Foundation
  • OrphanReach
  • Orthostatictremor.org
  • Osteogenesis Imperfecta Foundation
  • Otsuka America Pharmaceutical, Inc.
  • Our Promise to Nicholas Foundation
  • Oxalosis and Hyperoxaluria Foundation
  • Pachyonychia Congenita Project
  • Paget Foundation for Paget’s Disease of Bone and Related Disorders
  • Paley Advanced Limb Lengthening Institute
  • Palo Alto Investors
  • Pancreatic Cancer Action Network
  • PANDAS Network.org
  • Parent Project Muscular Dystrophy
  • Parent to Parent of New Zealand, Inc.
  • Parkinson’s Disease Foundation, Inc.
  • Patient Commando
  • Patient Crossroads
  • Patient Services, Inc. (PSI)
  • PCD Foundation
  • PCM TRIALS
  • Pediatric Adolescent Gastroesophageal Reflux Association
  • Pediatric Arachnoid Cyst Foundation
  • Pediatric Neurotransmitter Disease (PND) Association
  • Pediatric Orthopaedic Society of North America (POSNA)
  • People Inc.
  • Periodic Paralysis Association
  • PFIC.org
  • Pfizer Inc.
  • Pharmaceutical Research and Manufacturers of America
  • Phelan-McDermid Syndrome Foundation
  • Phi Delta Chi
  • Piedmont Editing Service
  • Pioneering Unique Cures for Kids
  • Pitt Hopkins Syndrome International Network
  • PKS Kids
  • PLAN
  • Platelet Disorder Support Association
  • PMD Foundation
  • PMG Awareness Organization
  • PMP Pals’ Network
  • PMP Research Foundation
  • Powell Gene Therapy Center at the University of Florida
  • Prader-Willi California Foundation
  • Prader-Willi Syndrome Association
  • Preferred Public Relations
  • Premier Reseach
  • PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome)
  • Progeria Research Foundation
  • Program for Neurodevelopmental Function in Rare Disorders (NFRD), University of North Carolina
  • Progression BioSciences
  • Progressive Pediatric Developmental Center
  • Prosensa
  • Prostate Cancer International
  • Proyecto Pide un Deseo Mexico
  • PRP Alliance
  • PRS-Different Faces
  • PSC Partners Seeking A Cure (Primary Sclerosing Cholangitis)
  • PTC Therapeutics
  • Pull-thru Network
  • Pulmonary Fibrosis Advocates
  • Pulmonary Fibrosis Foundation
  • Pulmonary Hypertension Association
  • PUMPA
  • Purdue Pharma
  • QLT Inc.
  • Questcor Pharmaceuticals
  • Rahais Technologies Pvt. Ltd.
  • Raptor Pharmaceuticals
  • Rare Disease Foundation of Iran
  • Rare Disease in China Newsletter
  • Rare Disease Legislative Advocates
  • Rare Disease Report
  • Rare Disease Therapeutics
  • Rare Genomics Institute
  • RARE Project
  • Rare Tumors
  • RareShare
  • Ray Vanco Childrens Foundation
  • Raynaud’s Association, Inc.
  • Reaching Beyond the Clouds
  • Realogy Cares
  • Rebirth of Praise
  • Recordati Rare Diseases
  • Recurrent Respiratory Papillomatosis Foundation
  • Red De Amor
  • Red Interactiva PCNE – Proyecto PCNE
  • Red Sanfilippo A.C.
  • Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
  • Regeneron Pharmaceuticals, inc.
  • ReGenX BioSciences
  • RemedyMD Registry Software
  • Remi Savioz Glut1 Foundation
  • Research Match
  • Resources of Hope
  • Respiratory Decade
  • Reynolda Counseling Services
  • RHIZOKIDS
  • Rhode Island Rare Disease Foundation
  • RLUC Inc
  • ROHHAD Fight Inc.
  • Rose F. Kennedy Center, Albert Einstein College of Medicine
  • Rothmund-Thomson Syndrome Foundation
  • Royal Commission Medical Centre
  • RSDLaughter.com
  • Rubinstein-Taybi Family Research Organization
  • Rudd’s Air Service
  • Russell-Silversupport.org
  • Rutgers University – SHRP
  • Samskara Foundation
  • Sanford Children’s Health Research
  • Sanford Research
  • Sanford-Burnham Medical Research Institute
  • Santhera Pharmaceuticals
  • Sarcoidosis Networking Association
  • Sarcoidosis Support Australia
  • Sarcoma Foundation of America
  • Sarepta Therapeutics
  • SCAD Alliance
  • SCID, Angels for Life Foundation
  • Scleroderma Foundation, Greater Chicago Chapter
  • Scleroderma Foundation, Inc.
  • Scleroderma Research Foundation
  • Scleroderma Society of the Philippines
  • Scriber Insurance agency
  • Scriber Insurance agency
  • Seaside Therapeutics, Inc.
  • Seattle Dizziness & Balance Disorders Group
  • Selexis SA
  • Share & Care Cockayne Syndrome Network
  • Sheri4MS
  • Shifa College of Medicine
  • Shire Pharmaceuticals
  • Short Bowel Syndrome Foundation, Inc.
  • Shriners Hospitals for Children
  • Shwachman Diamond Syndrome Foundation
  • Sickle Cell Cure Foundation
  • Sigma Tau Pharmaceuticals, Inc.
  • Simpson Health Care Executives
  • Siren Interactive
  • SMA Foundation
  • SNAPPIN’ MINISTRIES (Special Needs Parents Network)
  • Sociedad Mexicana De Errores Innatos Del Metabolismo Y Tamiz
  • Society for Glycobiology
  • Soft Bones, Inc.
  • Soligenix, Inc.
  • Sotos Syndrome Support Association
  • Southern Clay Products
  • SPARK Family Association
  • Spastic Paraplegia Foundation
  • Spinal Cord Tumor Association
  • SPS Matters/Stiff Person Syndrome Association
  • SSADH Association
  • St. Vincent’s Special Needs
  • ST/Dystonia Association
  • Standish Foundation for Children
  • Stanford University Medical Center ALS Clinic
  • Starbucks Chicopee
  • STARS US (Syncope Trust & Reflex Anoxic Seizures)
  • State Diagnostic and Counselling Centre
  • Stemline Therapeutics, Inc.
  • Stevens Johnson Syndrome Foundation
  • Stiff Person Syndrome Association
  • Stiffman Syndrome Blog (Debbie Richardson)
  • Stoney Creek Builders
  • Sturge-Weber Foundation
  • Sydney (Australia) Children’s Hospital: Dr. Michael Brydon
  • Synageva BioPharma Corp.
  • Syndromes Without A Name USA
  • Synowledge
  • Syringomyelia Foundation
  • Taiwan Foundation for Rare Disorders
  • Talecris Biotherapeutics, Inc.
  • TargetCancer
  • Tarlov Cyst Disease Foundation
  • Team Noah WE Care About Rare
  • Technology for Memory and Organization
  • Terrapinn
  • TEVA Pharmaceutical Industries
  • The Afternoon Nap Society
  • The Alliance Against Alveolar Soft Part Sarcoma
  • The American Spine and Chronic Pain Association
  • The Aneurysm and AVM Foundation
  • The Anson Group LLC
  • The Cavan Tommy Hoey Trust Ireland
  • The Cavan Tommy Hoey Trust
  • The Charles E Holman Foundation
  • The Cholangiocarcinoma Foundation
  • The Chronically Awesome Foundation
  • The Colleen Giblin Foundation
  • The Cure AVN Foundation
  • The Everything Else Foundation
  • The FH Foundation
  • The FPIES Foundation
  • The Guthy-Jackson Charitable Foundation
  • The IHope Foundation
  • The International Society for Mannosidosis and Related Diseases
  • The JMML Foundation
  • The Kathy Shih Memorial Foundation (for MSA)
  • The M.O.R.G.A.N. Project
  • The Manton Center for Orphan Disease Research
  • The Morgan Leary Vaughan Fund, Inc.
  • The Morrison Center
  • The Ms Ability Network
  • The Myelodysplastic Syndromes (MDS) Foundation, Inc.
  • The National CML Society
  • The NephCure Foundation
  • The Oley Foundation
  • The Project 3×5
  • The Ree Wynn Foundation
  • The Relief Foundation
  • The rsdcrpssociety
  • The Sudden Arrhythmia Death Syndromes (SADS) Foundation
  • The Sudden Unexplained Death In Childhood Program
  • The Ultra Rare Disease, Disorders & Disabilities Foundation
  • The Wales Fund
  • The Wynne Foundation Inc.
  • Therakos, Inc.
  • Thomas Jefferson High School
  • ThyCa: Thyroid Cancer Survivors’ Association, Inc.
  • Timmons Organization for Sarcoidosis Support
  • TN DCS
  • TNA, The Facial Pain Association
  • Tourette Syndrome Association
  • Trimethylaminuria Foundation
  • Trisomy 18 Foundation
  • Trisomy Families
  • Tristan Brown ABC’s of Rare Diseases Foundation
  • Tuberous Sclerosis Alliance
  • Turner Syndrome Foundation
  • Turner Syndrome Society of the United States
  • UC Irvine
  • Ultragenyx Pharmaceutical Inc.
  • UNC Chapel Hill School of Nursing
  • United Leukodystrophy Foundation
  • United Mitochondrial Disease Foundation
  • United Pompe Foundation
  • United States Adult Cystic Fibrosis Association
  • United Therapeutics Corporation
  • University of California, San Francisco Interstitial Lung Disease Program.
  • University of Connecticut Premedical Society
  • University of Florida, Powell GeneTherapy Center
  • Unlock the Cure for Ewing’s Sarcoma
  • Uplifting Athletes
  • Upsher-Smith
  • UrbanELITE Magazine
  • US Hereditary Angioedema Association
  • USA Fabry Awareness Club
  • UT GSM Preston Medical Library
  • Vanda Pharmaceuticals
  • Vasculitis Foundation
  • VCFS 22q11 Foundation Australia
  • Versartis, Inc
  • Vestibular Disorders Association (VEDA), USA
  • VHL Alliance
  • Virginia College
  • ViroPharma Inc.
  • Vision of Children Foundation
  • Wake Up Narcolepsy
  • Walk a Mile in My Shoes Campaign, EB Awareness
  • Walk for Willow
  • WarrenTech North
  • Watervillehomeoxygen.com
  • Watson Laboratories
  • WE MOVE
  • Wellspring Community Church
  • Werathah Web Site for Genetics Education: Saudi Arabia
  • Wilhelm Foundation
  • Williams Syndrome Association
  • Williams Syndrome Changing Lives Foundation
  • Williams Syndrome Family of Hope
  • Wilson Disease Association
  • Wisconsin Bleeding Disorders Network, Inc.
  • Wisconsin Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association, Inc.
  • Wobbly Feet Foundation, Inc.
  • Woodland Healthcare
  • Woody’s Mom, Inc.
  • XLH Network
  • Xoma Corporation
  • Zacharon Pharmaceuticals, Inc.
  • ZioPharm Oncolocy, Inc.