Patient Organizations - Page 31 of 48 - National Organization for Rare Disorders

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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National Council on Patient Information and Education

Teléfono: 301-340-3940 Correo electrónico: [email protected] Fax: 301-340-3944

https://rarediseases.org/es/organizations/national-council-on-patient-information-and-education/

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National Creutzfeldt-Jakob Disease Research & Surveillance Unit

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-creutzfeldt-jakob-disease-research-surveillance-unit/

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National Deaf Children’s Society

Teléfono: 207-490-8656 Correo electrónico: [email protected] Fax: 207-251-5020

https://rarediseases.org/es/organizations/national-deaf-childrens-society/

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National Disease Research Interchange

Teléfono: 215-557-7361 Correo electrónico: [email protected] Fax: 215-557-7154

https://rarediseases.org/es/organizations/national-disease-research-interchange/

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National Down Syndrome Congress

Teléfono: 770-604-9500 Correo electrónico: [email protected] Fax: 770-604-9898

https://rarediseases.org/es/organizations/national-down-syndrome-congress/

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National Down Syndrome Society

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-down-syndrome-society/

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National Eczema Association

Teléfono: 415-499-3474 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-eczema-association/

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National Eczema Society UK

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-eczema-society-uk/

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National Emphysema Foundation

Teléfono: 203-866-5000 Fax: 203-779-1000

https://rarediseases.org/es/organizations/national-emphysema-foundation/

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National Eosinophilia-Myalgia Syndrome Network

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Eosinophilia-Myalgia Syndrome

https://rarediseases.org/es/organizations/national-eosinophilia-myalgia-syndrome-network/

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National Eye Care Project

Teléfono: 877-887-6327 Correo electrónico: [email protected] Fax: 415-561-8567

https://rarediseases.org/es/organizations/national-eye-care-project/

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National Fabry Disease Foundation

Correo electrónico: [email protected] Fax: 800-651-9135

Enfermedades raras relacionadas: Fabry Disease

https://rarediseases.org/es/organizations/national-fabry-disease-foundation/

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National Federation of Families for Children’s Mental Health

Teléfono: 240-403-1901 Correo electrónico: [email protected] Fax: 240-403-1909

Enfermedades raras relacionadas: Trichotillomania

https://rarediseases.org/es/organizations/national-federation-of-families-for-childrens-mental-health/

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National Federation of the Blind

Teléfono: 410-659-9314 Correo electrónico: [email protected] Fax: 410-685-5653

Enfermedades raras relacionadas: Lenz Microphthalmia Syndrome, Amaurosis congénita de Leber, Retinitis Pigmentaria, ...

https://rarediseases.org/es/organizations/national-federation-of-the-blind/

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National Foundation for Ectodermal Dysplasias

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome de Ellis-Van Creveld, Síndrome trico-dento-óseo, Síndrome de dientes y uñas, ...

https://rarediseases.org/es/organizations/national-foundation-for-ectodermal-dysplasias-nfed/

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National Foundation of Dentistry For the Handicapped

Teléfono: 303-534-5360 Correo electrónico: [email protected] Fax: 303-534-5290

Enfermedades raras relacionadas: Síndrome orofaciodigital

https://rarediseases.org/es/organizations/national-foundation-of-dentistry-for-the-handicapped/

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National Fragile X Foundation

Teléfono: 925-938-9300 Correo electrónico: [email protected] Fax: 925-938-9315

Enfermedades raras relacionadas: Fragile X Syndrome

https://rarediseases.org/es/organizations/national-fragile-x-foundation-2/

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National Gaucher Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Enfermedad de Gaucher

https://rarediseases.org/es/organizations/national-gaucher-foundation/

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National Hansen’s Disease Program

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Lepra

https://rarediseases.org/es/organizations/national-hansens-disease-program/

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National Headache Foundation

Teléfono: 312-274-2650 Correo electrónico: [email protected] Fax: 312-460-9049

Enfermedades raras relacionadas: Síndrome de Vómitos Cíclicos, Cluster Headache, Tolosa Hunt Syndrome, ...

https://rarediseases.org/es/organizations/national-headache-foundation/

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National Health Council

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-health-council/

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National Health Information Center

Teléfono: 301-565-4167 Correo electrónico: [email protected] Fax: 301-984-4256

https://rarediseases.org/es/organizations/national-health-information-center/

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National Healthy Mothers, Healthy Babies Coalition

Teléfono: 703-837-4792 Correo electrónico: [email protected] Fax: 703-664-0485

Enfermedades raras relacionadas: Hyperemesis Gravidarum

https://rarediseases.org/es/organizations/national-healthy-mothers-healthy-babies-coalition/

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National Hospice and Palliative Care Organization

Teléfono: 703-837-1500 Correo electrónico: [email protected] Fax: 703-837-1233

Enfermedades raras relacionadas: Enfermedad de Gerstmann Sträussler Scheinker, Insomnio familiar fatal, Enfermedad de Creutzfeldt-Jakob ...

https://rarediseases.org/es/organizations/national-hospice-and-palliative-care-organization/

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National Hydrocephalus Foundation

Teléfono: 562-924-6666 Correo electrónico: [email protected] Fax: 562-924-6666

Enfermedades raras relacionadas: Síndrome de Walker Warburg, L1 Syndrome, Encephalocele, ...

https://rarediseases.org/es/organizations/national-hydrocephalus-foundation/

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National Initiative for Cockayne Syndrome

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Cockayne Syndrome

https://rarediseases.org/es/organizations/national-initiative-for-cockayne-syndrome/

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National Institute for Occupational Safety and Health

Teléfono: 513-533-8328 Correo electrónico: [email protected] Fax: 513-533-8347

Enfermedades raras relacionadas: Formaldehyde Poisoning, Envenenamiento por Metales Pesados

https://rarediseases.org/es/organizations/national-institute-for-occupational-safety-and-health/

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National Institute for Rehabilitation Engineering

Teléfono: 973-853-6585 Correo electrónico: [email protected] Fax: 928-832-2894

https://rarediseases.org/es/organizations/national-institute-for-rehabilitation-engineering/

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National Institute of Environmental Health Sciences

Teléfono: 919-541-3345 Correo electrónico: [email protected] Fax: 919-541-4395

https://rarediseases.org/es/organizations/national-institute-of-environmental-health-sciences/

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National Keratoconus Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Keratoconus

https://rarediseases.org/es/organizations/national-keratoconus-foundation/

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National Kidney Foundation

Teléfono: 212-889-2210 Correo electrónico: [email protected] Fax: 212-689-9261

Enfermedades raras relacionadas: Nephrogenic Systemic Fibrosis, Deficiencia de N-Acetilglutamato Sintetasa, Síndrome de Gitelman, ...

https://rarediseases.org/es/organizations/national-kidney-foundation/

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National Kidney Foundation Serving Connecticut

Teléfono: 203-439-7912 Correo electrónico: [email protected] Fax: 203-439-7934

https://rarediseases.org/es/organizations/national-kidney-foundation-serving-connecticut/

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National Leiomyosarcoma Foundation

Miembro NORD

Teléfono: 303-783-0924 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Leiomyosarcoma, Uterine Leiomyosarcoma

https://rarediseases.org/es/organizations/national-leiomyosarcoma-foundation/

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National Library of Medicine

Teléfono: 301-594-5983 Correo electrónico: [email protected] Fax: 301-402-1384

https://rarediseases.org/es/organizations/national-library-of-medicine/

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National Library Service for the Blind and Physically Handicapped

Teléfono: 202-707-5100 Correo electrónico: [email protected] Fax: 202-707-0712

https://rarediseases.org/es/organizations/national-library-service-for-the-blind-and-physically-handicapped/

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National Lymphedema Network, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Congenital Pulmonary Lymphangiectasia, Primary Lymphedema, Síndrome de las uñas amarillas, ...

https://rarediseases.org/es/organizations/national-lymphedema-network-inc/

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National MALS Foundation (Median Arcuate Ligament Syndrome)

Miembro NORD

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-mals-foundation-median-arcuate-ligament-syndrome/

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National Marrow Donor Program

Correo electrónico: [email protected] Fax: 612-627-8125

Enfermedades raras relacionadas: Myelodysplastic Syndromes

https://rarediseases.org/es/organizations/national-marrow-donor-program/

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National Median Arcuate Ligament Syndrome Foundation, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome del Ligamento Arcuato Medio

https://rarediseases.org/es/organizations/national-median-arcuate-ligament-syndrome-foundation-inc/

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National Meningitis Association

Teléfono: 866-366-3662 Correo electrónico: [email protected] Fax: 877-703-6096

Enfermedades raras relacionadas: Meningococcemia, Meningitis, Meningococcal Meningitis ...

https://rarediseases.org/es/organizations/national-meningitis-association/

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National Mental Health Consumers’ Self-Help Clearinghouse

Teléfono: 215-751-1810 Correo electrónico: [email protected] Fax: 215-636-6312

Enfermedades raras relacionadas: Kleine-Levin Syndrome, Neurasthenia, XYY Syndrome, ...

https://rarediseases.org/es/organizations/national-mental-health-consumers-self-help-clearinghouse/

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National MPS Society

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Mucopolysaccharidoses, Aspartilglucosaminuria, Mucopolysaccharidosis Type I, ...

https://rarediseases.org/es/organizations/national-mps-society/

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National Multiple Sclerosis Society

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome de la persona rígida, Encefalomielitis aguda diseminada, Enfermedad de Pelizaeus-Merzbacher, ...

https://rarediseases.org/es/organizations/national-multiple-sclerosis-society/

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National Neuromuscular Centre, Norway

Teléfono: 477-762-7217 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-neuromuscular-centre-norway/

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National Neutropenia Network

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Barth Syndrome, Hyper IgM Syndromes, Cyclic Neutropenia, ...

https://rarediseases.org/es/organizations/national-neutropenia-network/

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National Niemann-Pick Disease Foundation (NNPDF)

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Enfermedad de Niemann-Pick Tipo C, Deficiencia de esfingomielinasa ácida

https://rarediseases.org/es/organizations/national-niemann-pick-disease-foundation-nnpdf/

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National Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENEÂ®)

Correo electrónico: [email protected].

Enfermedades raras relacionadas: PLA2G6-Associated Neurodegeneration, Leber Hereditary Optic Neuropathy

https://rarediseases.org/es/organizations/national-ophthalmic-disease-genotyping-and-phenotyping-network-eyegenea/

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National Organization for Albinism and Hypopigmentation (NOAH)

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome oculocerebral con hipopigmentación, Albinismo ocular con sordera neurosensorial tardía, Ocular Albinism, ...

https://rarediseases.org/es/organizations/national-organization-for-albinism-and-hypopigmentation-noah/

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National Organization for Disorders of the Corpus Callosum

Teléfono: 714-747-0063 Correo electrónico: [email protected] Fax: 714-693-0808

Enfermedades raras relacionadas: Oculocerebrocutaneous Syndrome, Agenesis of Corpus Callosum

https://rarediseases.org/es/organizations/national-organization-for-disorders-of-the-corpus-callosum-2/

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