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Home / Patient Organizations / Patient Organizations
Emily’s Entourage
https://rarediseases.org/es/organizations/emilys-entourage/
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Encephalitis Global
Correo electrónico: [email protected] Fax: 604-904-0809
Enfermedades raras relacionadas: West Nile Encephalitis, Simian B Virus Infection, Subacute Sclerosing Panencephalitis ...
https://rarediseases.org/es/organizations/encephalitis-global/
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Encephalitis International
Enfermedades raras relacionadas: West Nile Encephalitis, Simian B Virus Infection, Subacute Sclerosing Panencephalitis, ...
https://rarediseases.org/es/organizations/encephalitis-international/
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End Alexander Disease Foundation
Enfermedades raras relacionadas: Alexander Disease
https://rarediseases.org/es/organizations/end-alexander-disease-foundation/
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Endocrine Society
Teléfono: 202-971-3636 Correo electrónico: [email protected] Fax: 202-736-9705
Enfermedades raras relacionadas: Craneofaringioma, Familial Isolated Hypoparathyroidism, Autoimmune Polyglandular Syndrome Type 1, ...
https://rarediseases.org/es/organizations/endocrine-society/
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Endometriosis Association
Teléfono: 414-355-2200 Correo electrónico: [email protected] Fax: 414-355-6065
Enfermedades raras relacionadas: Catamenial Pneumothorax
https://rarediseases.org/es/organizations/endometriosis-association/
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Endometriosis Research Center
Teléfono: 561-274-7442 Correo electrónico: [email protected] Fax: 561-274-0931
Enfermedades raras relacionadas: Catamenial Pneumothorax
https://rarediseases.org/es/organizations/endometriosis-research-center/
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Engle Laboratory at Children’s Hospital Boston
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Congenital Fibrosis of the Extraocular Muscles
https://rarediseases.org/es/organizations/engle-laboratory-at-childrens-hospital-boston/
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EOS Network – Eosinophilic Diseases Charity
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/eos-network-eosinophilic-diseases-charity/
Ver perfil >
Eosinophilic & Rare Disease Cooperative
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/eosinophilic-rare-disease-cooperative/
Ver perfil >
Epidermoid Brain Tumor Society
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/epidermoid-brain-tumor-society/
Ver perfil >
Epilepsy Canada
Fax: 905-513-9461
Enfermedades raras relacionadas: Congenital Bilateral Perisylvian Syndrome, Trastorno del neurodesarrollo relacionado con SETD1B, Progressive Myoclonus Epilepsy, ...
https://rarediseases.org/es/organizations/epilepsy-canada/
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Epilepsy Foundation
Teléfono: 866-330-2718 Correo electrónico: [email protected] Fax: 877-687-4878
Enfermedades raras relacionadas: Síndrome de Lennox-Gastaut, Trastorno del neurodesarrollo y epilepsia relacionados con DNM1, Trastorno del neurodesarrollo relacionado con TRPM3, ...
https://rarediseases.org/es/organizations/epilepsy-foundation/
Ver perfil >
Epilepsy Foundation of Victoria
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/epilepsy-foundation-of-victoria/
Ver perfil >
Equip For Equality, Inc.
Teléfono: 312-341-0022 Correo electrónico: [email protected] Fax: 312-341-0295
https://rarediseases.org/es/organizations/equip-for-equality-inc/
Ver perfil >
Erb’s Palsy Group
Teléfono: 247-641-3293 Correo electrónico: [email protected] Fax: 247-641-9857
https://rarediseases.org/es/organizations/erbs-palsy-group/
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Erythema Nodosum Yahoo Support Group
Enfermedades raras relacionadas: Fibromyalgia, Ulcerative Colitis, Lupus ...
https://rarediseases.org/es/organizations/erythema-nodosum-yahoo-support-group/
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Erythromelalgia Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Eritromelalgia
https://rarediseases.org/es/organizations/erythromelalgia-association/
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Erythropoietic Protoporphyria Research and Education Fund
Teléfono: 617-525-8249 Correo electrónico: [email protected]
Enfermedades raras relacionadas: X-Linked Protoporphyria, Erythropoietic Protoporphyria and X-Linked Protoporphyria
https://rarediseases.org/es/organizations/erythropoietic-protoporphyria-research-and-education-fund/
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Esophageal Cancer Awareness Association, Inc.
Teléfono: 607-257-1141 Correo electrónico: [email protected] Fax: 607-255-0349
Enfermedades raras relacionadas: Barrett Esophagus
https://rarediseases.org/es/organizations/esophageal-cancer-awareness-association-inc/
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euro-ATAXIA
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Ataxia con deficiencia de vitamina E
https://rarediseases.org/es/organizations/euro-ataxia/
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European Alliance of Neuromuscular Disorders Associations
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Congenital Myasthenic Syndromes, Centronuclear Myopathy, Congenital Muscular Dystrophy, ...
https://rarediseases.org/es/organizations/european-alliance-of-neuromuscular-disorders-associations/
Ver perfil >
European Chromosome 11q Network
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Jacobsen (monosomía parcial 11q)
https://rarediseases.org/es/organizations/european-chromosome-11q-network/
Ver perfil >
European Commission
https://rarediseases.org/es/organizations/european-commission/
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European Leukodystrophy Association
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Multiple Sulfatase Deficiency, Leucodistrofia metacromática, Zellweger Spectrum Disorders, ...
https://rarediseases.org/es/organizations/european-leukodystrophy-association/
Ver perfil >
European Multiple System Atrophy Study Group
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/european-multiple-system-atrophy-study-group/
Ver perfil >
European Network for Ichthyosis (ENI)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Chanarin-Dorfman Syndrome, Sjögren-Larsson Syndrome, Harlequin Ichthyosis, ...
https://rarediseases.org/es/organizations/european-network-for-ichthyosis-eni/
Ver perfil >
European Organization for Research and Treatment of Cancer
Teléfono: 322-774-1611 Correo electrónico: [email protected] Fax: 322-772-2004
https://rarediseases.org/es/organizations/european-organization-for-research-and-treatment-of-cancer/
Ver perfil >
European Society for Immunodeficiencies
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Complete DiGeorge Syndrome, Atimia congénita, Condrodisplasia Metafisaria Tipo McKusick, ...
https://rarediseases.org/es/organizations/european-society-for-immunodeficiencies/
Ver perfil >
EURORDIS-Rare Diseases Europe
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Pitiriasis Rubra Pilaris
https://rarediseases.org/es/organizations/eurordis-rare-diseases-europe/
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Extramammary Paget’s Disease Support Group: MyEMPD
Correo electrónico: https://www.myempd.com/contact
https://rarediseases.org/es/organizations/extramammary-pagets-disease-empd/
Ver perfil >
Eye Bank Association of America
Teléfono: 202-775-4999 Correo electrónico: [email protected] Fax: 202-429-6036
Enfermedades raras relacionadas: Keratoconus, Corneal Dystrophies
https://rarediseases.org/es/organizations/eye-bank-association-of-america/
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Eye Cancer Foundation
Correo electrónico: [email protected] Fax: 212-888-4030
Enfermedades raras relacionadas: Melanoma ocular, Macular Degeneration, Retinoblastoma, ...
https://rarediseases.org/es/organizations/eye-cancer-foundation/
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Eye Cancer Network
Teléfono: 212-832-8170 Correo electrónico: [email protected] Fax: 212-888-4030
Enfermedades raras relacionadas: Melanoma ocular, Retinoblastoma
https://rarediseases.org/es/organizations/eye-cancer-network/
Ver perfil >
Eye on Vision Foundation
Teléfono: 407-484-4947 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/eye-on-vision-foundation/
Ver perfil >
F.I.R.M.O. Fondazione Raffaella Becagli
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/f-i-r-m-o-fondazione-raffaella-becagli/
Ver perfil >
Fabry Support & Information Group
Teléfono: 660-463-1355 Correo electrónico: [email protected] Fax: 660-463-1356
Enfermedades raras relacionadas: Fabry Disease
https://rarediseases.org/es/organizations/fabry-support-information-group-2/
Ver perfil >
Fabry Support & Information Group
https://rarediseases.org/es/organizations/fabry-support-information-group/
Ver perfil >
FACES: The National Craniofacial Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome trico-dento-óseo, Síndrome de Treacher Collins, Síndrome de Binder, ...
https://rarediseases.org/es/organizations/faces-the-national-craniofacial-association/
Ver perfil >
Facial Pain Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Trigeminal Neuralgia
https://rarediseases.org/es/organizations/tna-the-facial-pain-association/
Ver perfil >
Fahr Beyond
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/fahr-beyond/
Ver perfil >
Fair Foundation
Correo electrónico: [email protected] Fax: 760-227-9471
https://rarediseases.org/es/organizations/fair-foundation/
Ver perfil >
Familial Dysautonomia Foundation, Inc.
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Fallo autonómico puro, Dysautonomia, Familial
https://rarediseases.org/es/organizations/familial-dysautonomia-foundation-inc/
Ver perfil >
Familial Dysautonomia Hope Foundation
Teléfono: 919-969-1414 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/familial-dysautonomia-hope-foundation/
Ver perfil >
Familial Dysautonomia Now Foundation
Teléfono: 847-913-0455 Correo electrónico: [email protected] Fax: 847-913-8589
https://rarediseases.org/es/organizations/familial-dysautonomia-now-foundation/
Ver perfil >
Familial GI Cancer Registry
Teléfono: 416-596-4200 Correo electrónico: [email protected] Fax: 416-585-5024
Enfermedades raras relacionadas: Turcot Syndrome, Familial Adenomatous Polyposis
https://rarediseases.org/es/organizations/familial-gi-cancer-registry/
Ver perfil >
FamilieSCN2A Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/familiescn2a-foundation/
Ver perfil >
Family Caregiver Alliance
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Wernicke-Korsakoff Syndrome
https://rarediseases.org/es/organizations/family-caregiver-alliance/
Ver perfil >
Family Resource Center on Disabilities
Teléfono: 312-939-3513 Fax: 312-854-8980
https://rarediseases.org/es/organizations/family-resource-center-on-disabilities/
Ver perfil >
Family Resource Centers Network of California
Teléfono: 415-282-7494 Correo electrónico: [email protected] Fax: 415-282-1226
https://rarediseases.org/es/organizations/family-resource-centers-network-of-california/
Ver perfil >
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