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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
    • About.com Rare Diseases
    • Accelerate Brain Cancer Cure
    • Accentia Biopharmaceuticals, Inc
    • Access Education
    • Accord Alliance
    • Accredo Health, Inc.
    • ACD Association
    • Aceras BioMedical, LLC
    • Achalasia Awareness
    • Acid Maltase Deficiency Association
    • ACOR (Association of Cancer Online Resources)
    • Acorda Therapeutics
    • Acromegaly Community, Inc.
    • Actelion Pharmaceuticals, Inc.
    • Addison’s Support
    • Additional Kare for Kids, Inc.
    • Adenoid Cystic Carcinoma Research Foundation
    • Advancement of Research for Myopathies (ARM)
    • Advocacy for Patients with Chronic Illness, Inc.
    • Aegerion Pharmaceuticals
    • Agility Clinical
    • 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
    • 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.
    • APBD Research Foundation
    • Apex MD
    • Aplastic Anemia & MDS International Foundation
    • Aplastic Anemia And Omid’s Mission Foundation
    • APS Foundation of America, Inc.
    • Arachnoid Cyst Awareness Organization (ACA)
    • Area 23
    • Arizona Hemophilia Association
    • ARPKD/CHF Alliance
    • Asbestos Disease Awareness Organization (ADAO)
    • Ask Me About AIH (Autoimmune Hepatitis)
    • 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 Shifa des Maladies NeuroMusculaires (ASMNM)
    • Astra Zeneca Pharmaceuticals LP
    • A-T Children’s Project
    • Aton Pharma, Inc.
    • Audentes Therapeutics
    • Australian Paediatric Surveillance Unit
    • Autoimmune Information Network
    • Autoinflammatory Alliance
    • 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
    • BEECH Australian Community
    • Benign Essential Blepharospasm Research Foundation
    • BensFriends.org
    • Besant Hill School
    • Beyond Batten Disease Foundation
    • BIO (Biotechnology Industry Organization)
    • BioMarin Pharmaceuticals Inc.
    • Biotest Pharmaceuticals
    • Boyer’s Organization of Sarcoidosis Sufferers
    • BRAIN TRUST: The Healing Exchange
    • Branchio-Oto-Renal Syndrome Awareness
    • Breath of Hope
    • British Paediatric Orphan Lung Diseases (BPOLD)
    • C. Cody Mitro Foundation Inc.
    • C.A.R.E.S. Foundation
    • CADASIL Association
    • CADASIL Foundation
    • Cailyns Parade
    • 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
    • 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
    • Centric Health Resources
    • Cephalon Inc.
    • Charcot-Marie-Tooth Association
    • Charcot-Marie-Tooth Support Group of Upstate New York
    • Chediak-Higashi Syndrome Association
    • 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 Interstitial and Diffuse Lung Disease Foundation
    • Children’s PKU Network
    • Children’s Tumor Foundation
    • China-dolls Care and Support Association
    • Chinese Rare Disease Organization
    • Chloe’s Fight Rare Disease Foundation
    • 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
    • Clinigen
    • CLOVES Syndrome Community
    • CMTC-OVM Cutis Marmorata Telangiectatica Congenita
    • 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
    • Council for Bile Acid Deficiency Diseases
    • CRB1.org
    • Creative Control Films
    • Cryoglobulinemia Vasculitis Organization
    • CSL Behring
    • 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
    • Dana Jones Foundation, Inc.
    • Dana’s Angels Research Trust
    • Dandy-Walker Alliance
    • Daniella Maria Arturi Foundation
    • Danielle’s Hope
    • Darlington House
    • Daystar for Medically Fragile Infants, Inc.
    • DebRA of America, Inc.
    • 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
    • DNA Traits
    • Dompé
    • DonateGames.org
    • Doose Syndrome Epilepsy Alliance
    • Dravet
    • Dravet Syndrome Foundation
    • Dravet.org
    • Drewstock, Inc.
    • Duchenne Parent Project Italy
    • Duchesnay Inc.
    • Dup15 Alliance
    • Dyax Corp
    • Dysautonomia Foundation, Inc.
    • Dysautonomia International
    • Dyskeratosis Congenita Outreach, Inc.
    • Dystonia Medical Research Foundation
    • Dystrophic Epidermolysis Bullosa Research Association of Canada
    • 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
    • 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
    • Expedition Awareness
    • Express Scripts
    • Eye on Vision Foundation
    • Fabry NFDF
    • Fabry Support and Information Group
    • 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
    • Filipiak Chiropractic Center
    • First Response Medical Training
    • FMD Chat
    • FMDSA
    • Foundation Fighting Blindness
    • Foundation for Angelman Syndrome Therapeutics
    • 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
    • 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
    • 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
    • Glycobiology Research and Training Center at the University of California, San Diego
    • GlycoMimetics, Inc.
    • Good Shepherd Medical Center
    • Grupo de Estudos de Doenças Raras
    • Gulf Coast Pain Management
    • Gwendolyn Strong Foundation
    • 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
    • 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
    • Heroic Inner Kids
    • 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
    • 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
    • Hyperion Therapeutics
    • Hypermobility Syndromes Association
    • Hypoparathyroidism Association
    • I Have IIH
    • IDEAS – IsoDicentric 15 Exchange Advocacy and Support
    • IDIS Pharmaceuticals
    • IKARIA
    • Illinois Department of Public Health, Genetics Program
    • Illumina
    • Immune Deficiency Foundation
    • In Need Of Diagnosis, Inc. (INOD)
    • Incontinentia Pigmenti International Foundation
    • Infant Botulism Treatment and Prevention Program, California Department of Public Health
    • Insmed Incorporated
    • Institute for Rare and Neglected Diseases Drug Discovery
    • Instituto de Medicina Genomica
    • InterMune
    • International Advocate for Glycoprotein Storage Diseases
    • International Association for Food Protein Entercolitis
    • 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
  • Janine Sarcoidosis Outreach Foundation
  • Jareds Juggernaut to Cure Sarcomas
  • JBS International, Inc.
  • 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
  • Lafayette James Foundation
  • LAL Solace, Inc.
  • LAM Health Project
  • Lapidus Data LLC
  • Les Turner ALS Foundation, Ltd
  • 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
  • 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.)
  • Lung Foundation Australia
  • Lymphangiomatosis (LAM) Foundation
  • Lymphangiomatosis and Gorham’s Disease Alliance
  • Lymphatic Research Foundation
  • Lynch Syndrome International
  • Lysosomal Diseases New Zealand
  • Maddi’s Hope
  • Maddy Splashes Out RSDS
  • MAGIC Foundation
  • Makrocare
  • 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
  • Massasoit Community College
  • MassBio
  • 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
  • Medicis Pharmaceutical Corp.
  • Medpace
  • Medtronic, Inc.
  • Medunik Canada
  • Melanoma Research Foundation/CURE Ocular Melanoma
  • Melorheostosis Association
  • Mercy Medical Airlift
  • Mesothelioma Applied Research Foundation
  • MHE and Me
  • MHE Coalition
  • MHE Research Foundation
  • Midwest Women’s Vascular Advocates
  • Milestones for Children
  • Mission City Community Network Health Clinics
  • Mississippi Hearing-Vision Project
  • Mississippi Mended Little Hearts
  • MitoAction
  • MLD Foundation
  • Moebius Syndrome Foundation
  • Moi University
  • Monarch Cares Rare Disease Cooperative
  • mondoBIOTECH
  • MPN Research Foundation
  • MPS Jajax A.C.
  • Mucolipodosis Type IV Foundation
  • Muscular Dystrophy Society Kenya
  • Mustang Insurance Agency
  • My Impact
  • Myasthenia Gravis Foundation of America, Inc
  • Myocarditis Foundation
  • Myositis Association
  • Myotonic Dystrophy Foundation
  • Narcolepsy Network, Inc.
  • 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 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
  • Neurofibromatosis Network
  • Neurofibromatosis, Inc., Northeast
  • Neuromuscular Disease Foundation
  • New York State Rare Disease Alliance Inc.
  • Niños de Hierro A.C.
  • NN/LM Pacific Southwest Region
  • 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
  • OmniaVincit, LLC
  • Onyx Pharmaceuticals Inc.
  • Optherion Inc.
  • Oregon Health & Science University Rare Disorders Research Consortium
  • Organic Acidemia Association
  • Orphan Drug Solutions
  • Orphan Europe
  • Orphan Therapeutics
  • OrphanReach
  • Orthostatictremor.org
  • Osteogenesis Imperfecta Foundation
  • 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 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
  • Piedmont Editing Service
  • Pioneering Unique Cures for Kids
  • Pitt Hopkins Syndrome International Network
  • PKS Kids
  • Platelet Disorder Support Association
  • PMD Foundation
  • 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
  • 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 Therapeutics
  • Rare Genomics Institute
  • Rare Tumors
  • RareShare
  • Ray Vanco Childrens Foundation
  • Raynaud’s Association, Inc.
  • Reaching Beyond the Clouds
  • Realogy Cares
  • Rebirth of Praise
  • 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
  • Remarkably Rare Designs
  • RemedyMD Registry Software
  • Remi Savioz Glut1 Foundation
  • Research Match
  • Respiratory Decade
  • Retrophin, Inc.
  • Reynolda Counseling Services
  • RHIZOKIDS
  • Rhode Island Rare Disease Foundation
  • ROHHAD Fight Inc.
  • Rose F. Kennedy Center, Albert Einstein College of Medicine
  • Royal Commission Medical Centre
  • RSDLaughter.com
  • Rubinstein-Taybi Family Research Organization
  • Rudd’s Air Service
  • Russell-Silversupport.org
  • Samskara Foundation
  • Sanford Children’s Health Research
  • Sanford Research
  • Sanford-Burnham Medical Research Institute
  • Santhera Pharmaceuticals
  • Sarcoidosis Lyme Australia
  • Sarcoidosis Networking Association
  • 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
  • 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.
  • 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
  • Spastic Paraplegia Foundation
  • Spinal Cord Tumor 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)
  • Stevens Johnson Syndrome Foundation
  • Stiff Person Syndrome Association
  • Stiffman Syndrome Blog (Debbie Richardson)
  • Sturge-Weber Foundation
  • 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
  • Terrapinn
  • The Afternoon Nap Society
  • The American Spine and Chronic Pain Association
  • The Aneurysm and AVM Foundation
  • The Cavan Tommy Hoey Trust
  • The Cavan Tommy Hoey Trust Ireland
  • The Charles E Holman Foundation
  • The Cholangiocarcinoma Foundation
  • The Chronically Awesome Foundation
  • The Colleen Giblin Foundation
  • The Everything Else Foundation
  • The FH Foundation
  • The FPIES Foundation
  • The Guthy-Jackson Charitable Foundation
  • 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 Morrison Center
  • The Ms Ability Network
  • The Myelodysplastic Syndromes (MDS) Foundation, Inc.
  • The National CML Society
  • The NephCure Foundation
  • The Oley Foundation
  • The Orphan’s Dream Foundation
  • The Project 3×5
  • The Ree Wynn Foundation
  • The Relief Foundation
  • 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
  • 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 Global Alliance
  • UC Irvine
  • UCONN School of Medicine, Disabilities Interest Group
  • Ultragenyx Pharmaceutical Inc.
  • UNC Chapel Hill School of Nursing
  • United Leukodystrophy Foundation
  • United Mitochondrial Disease Foundation
  • United Pompe Foundation
  • 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
  • US Hereditary Angioedema Association
  • UT GSM Preston Medical Library
  • Vasculitis Foundation
  • VCFS 22q11 Foundation Australia
  • Vestibular Disorders Association (VEDA), USA
  • VHL Family Alliance
  • Virginia College
  • Vision of Children Foundation
  • Wake Up Narcolepsy
  • Walk a Mile in My Shoes
  • WarrenTech North
  • Wellspring Community Church
  • Werathah
  • 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
  • ZioPharm Oncolocy, Inc.