Patient Organizations - Page 32 of 48 - National Organization for Rare Disorders

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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National Organization For Rare Disorders

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-organization-for-rare-disorders/

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National Organization for Rare Disorders, Inc.

Teléfono: 203-744-0100 Correo electrónico: [email protected] Fax: 203-798-2291

https://rarediseases.org/es/organizations/national-organization-for-rare-disorders-inc/

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National Organization of Social Security Claimants’ Representatives

Correo electrónico: [email protected] Fax: 201-567-1542

https://rarediseases.org/es/organizations/national-organization-of-social-security-claimants-representatives/

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National Organization on Disability

Teléfono: 645-505-1191 Correo electrónico: [email protected] Fax: 645-505-1184

https://rarediseases.org/es/organizations/national-organization-on-disability/

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National Ovarian Cancer Coalition

Teléfono: 214-273-4200 Fax: 214-273-4201

Enfermedades raras relacionadas: Ovarian Cancer

https://rarediseases.org/es/organizations/national-ovarian-cancer-coalition/

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National Parkinson Foundation, Inc.

Teléfono: 305-243-6666 Correo electrónico: [email protected] Fax: 305-243-6073

Enfermedades raras relacionadas: Olivopontocerebellar Atrophy, Atrofia multisistémica

https://rarediseases.org/es/organizations/national-parkinson-foundation-inc/

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National Patient Travel Center

Teléfono: 757-512-5287 Correo electrónico: [email protected] Fax: 800-550-1767

https://rarediseases.org/es/organizations/national-patient-travel-center/

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National Pediatric Neuroinflammation Organization, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Progressive Myoclonus Epilepsy, Juvenile CLN3 Disease, General Myoclonus ...

https://rarediseases.org/es/organizations/national-pediatric-neuroinflammation-organization-inc/

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National Perinatal Association

Correo electrónico: [email protected] Fax: 703-684-5968

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

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National Perinatal Information Center

Teléfono: 401-274-0650 Correo electrónico: [email protected] Fax: 401-455-0377

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

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National Pesticide Information Center

Correo electrónico: [email protected] Fax: 541-737-0761

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

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National PKU Alliance

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Phenylketonuria

https://rarediseases.org/es/organizations/national-pku-alliance/

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National Prion Disease Pathology Surveillance Center

Teléfono: 216-368-0587 Correo electrónico: [email protected] Fax: 216-368-4090

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

https://rarediseases.org/es/organizations/national-prion-disease-pathology-surveillance-center/

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National Prune Belly Syndrome Network

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Prune Belly Syndrome

https://rarediseases.org/es/organizations/national-prune-belly-syndrome-network/

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National Psoriasis Foundation

Teléfono: 503-244-7404 Correo electrónico: [email protected] Fax: 503-245-0626

Enfermedades raras relacionadas: Pustulosis palmoplantar, Psoriasis Pustulosa Generalizada

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

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National Rehabilitation Association

Teléfono: 703-836-0850 Correo electrónico: [email protected] Fax: 703-836-0848

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

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National Rehabilitation Information Center

Teléfono: 301-459-5900 Correo electrónico: [email protected] Fax: 301-459-4263

Enfermedades raras relacionadas: Phocomelia Syndrome, Locked In Syndrome

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

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National Research Center for Career and Technical Education

Teléfono: 502-852-4727 Correo electrónico: [email protected] Fax: 502-852-3308

https://rarediseases.org/es/organizations/national-research-center-for-career-and-technical-education/

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National Reye’s Syndrome Foundation, Inc.

Teléfono: 419-636-2679 Correo electrónico: [email protected] Fax: 419-636-9897

Enfermedades raras relacionadas: Síndrome de Reye

https://rarediseases.org/es/organizations/national-reyes-syndrome-foundation-inc/

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National Rosacea Society

Teléfono: 847-382-8971 Correo electrónico: [email protected] Fax: 847-382-5567

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

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National Safety Council/Environmental Health Center

Teléfono: 630-285-1121 Correo electrónico: [email protected] Fax: 630-285-1315

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

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National Scleroderma Foundation

Miembro NORD

Teléfono: 800-722-4673 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Enfermedad Mixta del Tejido Conectivo, Esclerodermia sistémica, Scleroderma ...

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

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National Scoliosis Foundation

Teléfono: 781-341-8333 Correo electrónico: [email protected] Fax: 781-341-8333

Enfermedades raras relacionadas: Ataxia de Friedreich, Síndrome de Marfan, Ataxia con deficiencia de vitamina E, ...

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

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National Shared Housing Resource Center

Teléfono: 650-348-6660 Correo electrónico: [email protected] Fax: 650-348-0284

https://rarediseases.org/es/organizations/national-shared-housing-resource-center/

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National Shingles Foundation

Teléfono: 212-222-3390 Correo electrónico: [email protected] Fax: 212-222-8627

Enfermedades raras relacionadas: Síndrome de Ramsay Hunt

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

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National Sjogren’s Syndrome

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Sjögren Syndrome

https://rarediseases.org/es/organizations/national-sjogrens-syndrome/

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National Sleep Foundation

Teléfono: 703-243-1697 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Kleine-Levin Syndrome, Restless Legs Syndrome, General Myoclonus, ...

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

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National Society for Phenylketonuria (UK)

Correo electrónico: [email protected] Fax: 845-004-8341

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

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National Society of Genetic Counselors

Teléfono: 312-321-6834 Correo electrónico: [email protected] Fax: 312-673-6972

https://rarediseases.org/es/organizations/national-society-of-genetic-counselors/

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National Spasmodic Dysphonia Association

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-spasmodic-dysphonia-association/

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National Spasmodic Torticollis Association

Teléfono: 714-378-9837 Correo electrónico: [email protected] Fax: 714-378-9830

Enfermedades raras relacionadas: Cervical Dystonia

https://rarediseases.org/es/organizations/national-spasmodic-torticollis-association/

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National Spinal Cord Injury Association

Teléfono: 718-803-3782 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Brown Séquard Syndrome, Diastrophic Dysplasia, Transverse Myelitis, ...

https://rarediseases.org/es/organizations/national-spinal-cord-injury-association/

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National Stem Cell Foundation

Teléfono: 502-379-8544 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/national-stem-cell-foundation/

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National Stroke Association

Teléfono: 303-649-9299 Correo electrónico: [email protected] Fax: 303-649-1328

Enfermedades raras relacionadas: Asherson’s Syndrome, Sneddon Syndrome, Antiphospholipid Syndrome, ...

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

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National Stuttering Association

Teléfono: 212-944-4050 Correo electrónico: [email protected] Fax: 212-944-8244

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

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National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Leucodistrofia metacromática, Enfermedad de Wolman, Classic Infantile CLN1 Disease, ...

https://rarediseases.org/es/organizations/national-tay-sachs-allied-diseases-association-inc-ntsad/

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National Temporal Bone, Hearing & Balance Pathology Resource Registry

Teléfono: 617-573-3711 Correo electrónico: [email protected] Fax: 617-573-3838

https://rarediseases.org/es/organizations/national-temporal-bone-hearing-balance-pathology-resource-registry/

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National Urea Cycle Disorders Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndromes de deficiencia de creatina cerebral, Deficiencia de N-Acetilglutamato Sintetasa, Hiperornitinemia-Hiperamonemia-Homocitrulinuria (Síndrome HHH), ...

https://rarediseases.org/es/organizations/national-urea-cycle-disorders-foundation/

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National Veterans Services Fund

Teléfono: 203-656-0003 Correo electrónico: [email protected] Fax: 203-656-1957

https://rarediseases.org/es/organizations/national-veterans-services-fund/

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National Vulvodynia Association

Teléfono: 301-299-0775 Correo electrónico: [email protected] Fax: 301-299-3999

Enfermedades raras relacionadas: Lichen Sclerosus

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

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National Women’s Health Information Center

Fax: 703-560-6598

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

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National Women’s Health Network

Teléfono: 202-682-2640 Correo electrónico: [email protected] Fax: 202-682-2648

Enfermedades raras relacionadas: Embolia de líquido amniótico, Catamenial Pneumothorax, Uterine Leiomyosarcoma, ...

https://rarediseases.org/es/organizations/national-womens-health-network/

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National Women’s Health Resource Center

Teléfono: 732-530-3425 Correo electrónico: [email protected] Fax: 732-530-3347

Enfermedades raras relacionadas: Hyperemesis Gravidarum, Lichen Sclerosus, Ahumada-Del Castillo Syndrome, ...

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

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