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Home / Patient Organizations / Patient Organizations
Myrovlytis Trust
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Leiomiomatosis hereditaria y carcinoma de células renales, Síndrome de Birt-Hogg-Dubé
https://rarediseases.org/es/organizations/myrovlytis-trust/
Ver perfil >
naevus global
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/naevus-global/
Ver perfil >
Nail Patella Syndrome Worldwide
Teléfono: 703-626-6852 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Nail Patella Syndrome
https://rarediseases.org/es/organizations/nail-patella-syndrome-worldwide/
Ver perfil >
Nail-Patella Syndrome (UK)
Teléfono: 800-121-8298 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/nail-patella-syndrome-uk/
Ver perfil >
Naitbabies
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Trombocitopenia aloinmune fetal y neonatal
https://rarediseases.org/es/organizations/naitbabies/
Ver perfil >
Narcolepsy Network
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Narcolepsy
https://rarediseases.org/es/organizations/narcolepsy-network/
Ver perfil >
Nathaniel Adamczyk Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Acute Respiratory Distress Syndrome
https://rarediseases.org/es/organizations/nathaniel-adamczyk-foundation/
Ver perfil >
National Academy of Elder Law Attorneys, Inc.
Teléfono: 703-942-5711 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/national-academy-of-elder-law-attorneys-inc/
Ver perfil >
National Adrenal Diseases Foundation (NADF)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Autoimmune Polyendocrine Syndrome Type II, Síndrome de Nelson, Síndrome MIRAGE, ...
https://rarediseases.org/es/organizations/national-adrenal-diseases-foundation-nadf/
Ver perfil >
National Alliance for Hispanic Health
Teléfono: 202-387-5000 Correo electrónico: [email protected] Fax: 202-265-8027
https://rarediseases.org/es/organizations/national-alliance-for-hispanic-health/
Ver perfil >
National Alliance on Mental Illness
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Neurasthenia, Discinesia tardía, XYY Syndrome, ...
https://rarediseases.org/es/organizations/national-alliance-on-mental-illness/
Ver perfil >
National Alopecia Areata Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/national-alopecia-areata-foundation/
Ver perfil >
National ALS Registry
Teléfono: 877-442-9719
Enfermedades raras relacionadas: Esclerosis lateral amiotrófica
https://rarediseases.org/es/organizations/national-als-registry/
Ver perfil >
National Amputation Foundation, Inc.
Teléfono: 516-887-3600 Correo electrónico: [email protected] Fax: 516-887-3667
https://rarediseases.org/es/organizations/national-amputation-foundation-inc/
Ver perfil >
National Ankylosing Spondylitis Society
Teléfono: 208-948-9117 Correo electrónico: [email protected] Fax: 208-940-7736
Enfermedades raras relacionadas: Ankylosing Spondylitis
https://rarediseases.org/es/organizations/national-ankylosing-spondylitis-society/
Ver perfil >
National Aphasia Association
Teléfono: 212-267-2814 Correo electrónico: [email protected] Fax: 212-267-2812
Enfermedades raras relacionadas: L1 Syndrome, Apraxia, Landau Kleffner Syndrome ...
https://rarediseases.org/es/organizations/national-aphasia-association/
Ver perfil >
National Arts & Disability Center
Teléfono: 310-794-1141 Correo electrónico: [email protected] Fax: 310-794-1143
https://rarediseases.org/es/organizations/national-arts-disability-center/
Ver perfil >
National Association for Adults with Special Learning Needs
Fax: 614-392-1559
https://rarediseases.org/es/organizations/national-association-for-adults-with-special-learning-needs/
Ver perfil >
National Association for Colitis & Crohn’s Disease (UK)
Teléfono: 845-130-2233 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/national-association-for-colitis-crohns-disease-uk/
Ver perfil >
National Association for Continence
Teléfono: 843-377-0900 Correo electrónico: [email protected] Fax: 342-377-0905
Enfermedades raras relacionadas: Bladder Exstrophy-Epispadias-Cloacal Exstrophy Complex, Enfermedad de Binswanger
https://rarediseases.org/es/organizations/national-association-for-continence/
Ver perfil >
National Association for the Dually Diagnosed
Teléfono: 845-331-4336 Correo electrónico: [email protected] Fax: 845-331-4569
https://rarediseases.org/es/organizations/national-association-for-the-dually-diagnosed/
Ver perfil >
National Association for the Education of Young Children
Teléfono: 202-232-8777 Fax: 202-328-1846
https://rarediseases.org/es/organizations/national-association-for-the-education-of-young-children/
Ver perfil >
National Association of Hospital Hospitality Houses, Inc.
Teléfono: 828-253-1188 Correo electrónico: [email protected] Fax: 828-253-8082
https://rarediseases.org/es/organizations/national-association-of-hospital-hospitality-houses-inc/
Ver perfil >
National Association of Laryngectomee Clubs (UK)
Teléfono: 207-730-8585 Correo electrónico: [email protected] Fax: 207-730-8584
https://rarediseases.org/es/organizations/national-association-of-laryngectomee-clubs-uk/
Ver perfil >
National Association of Protection and Advocacy Systems
Teléfono: 202-408-9514 Correo electrónico: [email protected] Fax: 202-408-9520
https://rarediseases.org/es/organizations/national-association-of-protection-and-advocacy-systems/
Ver perfil >
National Association of Psychiatric Health Systems
Teléfono: 202-393-6700 Correo electrónico: [email protected] Fax: 202-783-6041
https://rarediseases.org/es/organizations/national-association-of-psychiatric-health-systems/
Ver perfil >
National Association of State Mental Health Program Directors
Teléfono: 703-739-9333 Correo electrónico: [email protected] Fax: 703-548-9517
https://rarediseases.org/es/organizations/national-association-of-state-mental-health-program-directors/
Ver perfil >
National Association of the Deaf
Teléfono: 301-587-1788 Correo electrónico: [email protected] Fax: 301-587-1791
Enfermedades raras relacionadas: Síndrome de Pendred, Síndrome de Sordera-Distonía-Neuronopatía Óptica (DDON), Camurati-Engelmann Disease, ...
https://rarediseases.org/es/organizations/national-association-of-the-deaf/
Ver perfil >
National Ataxia Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Subacute Cerebellar Degeneration, Ataxia de Friedreich, Enfermedad de Machado-Joseph, ...
https://rarediseases.org/es/organizations/national-ataxia-foundation/
Ver perfil >
National Autistic Society
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/national-autistic-society/
Ver perfil >
National Axial Spondyloarthritis Society
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Ankylosing Spondylitis
https://rarediseases.org/es/organizations/national-axial-spondyloarthritis-society/
Ver perfil >
National Batten Disease Registry
Teléfono: 718-494-5201 Correo electrónico: [email protected] Fax: 718-982-6346
Enfermedades raras relacionadas: Juvenile CLN3 Disease
https://rarediseases.org/es/organizations/national-batten-disease-registry/
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National Bleeding Disorders Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Hemofilia B adquirida, Factor XI Deficiency, Factor VII Deficiency, ...
https://rarediseases.org/es/organizations/national-hemophilia-foundation/
Ver perfil >
National Blood Clot Alliance
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Vasculopatía livedoide, Trombofilia hereditaria grave por deficiencia congénita de proteína S, Protein C Deficiency, ...
https://rarediseases.org/es/organizations/national-blood-clot-alliance/
Ver perfil >
National Board For Respiratory Care, Inc.
Teléfono: 913-895-4900 Correo electrónico: [email protected] Fax: 913-895-4650
https://rarediseases.org/es/organizations/national-board-for-respiratory-care-inc/
Ver perfil >
National Bone Marrow Transplant Link
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Graft versus Host Disease
https://rarediseases.org/es/organizations/national-bone-marrow-transplant-link/
Ver perfil >
National Brain Tumor Society (NBTS)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Glioblastoma, Glioma, Craneofaringioma, ...
https://rarediseases.org/es/organizations/national-brain-tumor-society-nbts/
Ver perfil >
National Breast Cancer Coalition
Teléfono: 202-296-7477 Correo electrónico: [email protected] Fax: 202-296-7477
Enfermedades raras relacionadas: Síndrome de cáncer hereditario de mama y/o de ovario
https://rarediseases.org/es/organizations/national-breast-cancer-coalition/
Ver perfil >
National Cancer Institute
Teléfono: 301-435-3848 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Cáncer de pulmón de células pequeñas, Cáncer de uraco, Linfoma gástrico primario, ...
https://rarediseases.org/es/organizations/national-cancer-institute/
Ver perfil >
National Captioning Institute
Teléfono: 703-917-7600 Correo electrónico: [email protected] Fax: 703-917-9853
https://rarediseases.org/es/organizations/national-captioning-institute/
Ver perfil >
National Center for Chromosome Inversions
Teléfono: 386-752-1548 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome del ojo de gato
https://rarediseases.org/es/organizations/national-center-for-chromosome-inversions/
Ver perfil >
National Center for Environmental Health Strategies, Inc.
Teléfono: 856-429-5358 Correo electrónico: [email protected] Fax: 856-816-8820
Enfermedades raras relacionadas: Formaldehyde Poisoning
https://rarediseases.org/es/organizations/national-center-for-environmental-health-strategies-inc/
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National Center for Health Statistics
Teléfono: 301-436-8500 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/national-center-for-health-statistics/
Ver perfil >
National Center for Learning Disabilities
Teléfono: 212-545-7510 Correo electrónico: [email protected] Fax: 212-545-9665
Enfermedades raras relacionadas: Beta-manosidosis, Trisomía X (síndrome del triple X o 47, XXX), Gerstmann Syndrome ...
https://rarediseases.org/es/organizations/national-center-for-learning-disabilities/
Ver perfil >
National Center on Deaf-Blindness
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alström Syndrome, Síndrome CHARGE, Norrie Disease, ...
https://rarediseases.org/es/organizations/national-center-on-deaf-blindness/
Ver perfil >
National Cervical Cancer Coalition
Teléfono: 818-992-4242 Correo electrónico: [email protected] Fax: 818-992-4178
https://rarediseases.org/es/organizations/national-cervical-cancer-coalition/
Ver perfil >
National CFIDS Foundation, Inc.
Teléfono: 781-449-3535 Correo electrónico: [email protected] Fax: 781-449-8606
Enfermedades raras relacionadas: Fibromyalgia
https://rarediseases.org/es/organizations/national-cfids-foundation-inc/
Ver perfil >
National CMV (Cytomegalovirus) Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Cytomegalovirus Infection
https://rarediseases.org/es/organizations/national-cmv-cytomegalovirus-foundation/
Ver perfil >
National Coalition for Cancer Survivorship
Teléfono: 301-650-9127 Correo electrónico: [email protected] Fax: 301-565-9670
Enfermedades raras relacionadas: Cáncer de pulmón de células pequeñas, Cáncer de esófago, Neoplasias Neuroendocrinas Pancreáticas (pNENs), ...
https://rarediseases.org/es/organizations/national-coalition-for-cancer-survivorship/
Ver perfil >
National Council on Disability
Teléfono: 202-272-2004 Correo electrónico: [email protected] Fax: 202-205-2022
https://rarediseases.org/es/organizations/national-council-on-disability/
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