Patient Organizations - Página 9 de 46 - National Organization for Rare Disorders

Carter Centers for Brain Research in Holoprosencephaly and Related Malformations

Teléfono: 214-559-8411 Correo electrónico: [email protected] Fax: 214-559-8383

Enfermedades raras relacionadas: Holoprosencephaly

https://rarediseases.org/es/organizations/carter-centers-for-brain-research-in-holoprosencephaly-and-related-malformations/

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Castleman Disease Collaborative Network

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Castleman Disease

https://rarediseases.org/es/organizations/castleman-disease-collaborative-network/

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Cat Eye Syndrome International

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome del ojo de gato

https://rarediseases.org/es/organizations/cat-eye-syndrome-international/

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Catastrophic Illness in Children Relief Fund Commission

Teléfono: 609-292-0600 Fax: 609-633-2947

https://rarediseases.org/es/organizations/catastrophic-illness-in-children-relief-fund-commission/

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Cauda Equina Foundation

Miembro NORD

Teléfono: 407-984-6394 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/cauda-equina-foundation/

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CCHS Network (Congenital Central Hypoventilation Syndrome)

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Congenital Central Hypoventilation Syndrome

https://rarediseases.org/es/organizations/cchs-network-congenital-central-hypoventilation-syndrome/

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CDG CARE Family Support Network

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Deficiencia de GM3 sintasa, PMM2-CDG, Trastornos congénitos de la glicosilación (2021), ...

https://rarediseases.org/es/organizations/cdg-care-family-support-network/

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CDH International

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Fryns Syndrome, Pentalogy of Cantrell

https://rarediseases.org/es/organizations/cdh-international/

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CDMD at UCLA

https://rarediseases.org/es/organizations/cdmd-at-ucla/

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Cedars-Sinai Medical Genetics Institute

Teléfono: 310-423-9914 Fax: 310-423-2080

https://rarediseases.org/es/organizations/cedars-sinai-medical-genetics-institute/

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Celiac Disease Foundation

Teléfono: 818-716-1513 Correo electrónico: [email protected] Fax: 818-267-5577

Enfermedades raras relacionadas: Refractory Celiac Disease, Celiac Disease

https://rarediseases.org/es/organizations/celiac-disease-foundation/

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Celiac Sprue Association

Teléfono: 402-558-0600 Correo electrónico: [email protected] Fax: 402-643-4108

Enfermedades raras relacionadas: Refractory Celiac Disease, Autoimmune Polyendocrine Syndrome Type II, Celiac Disease ...

https://rarediseases.org/es/organizations/celiac-sprue-association/

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Center for Assistive Technology

Teléfono: 716-836-1168 Correo electrónico: [email protected] Fax: 716-836-0105

https://rarediseases.org/es/organizations/center-for-assistive-technology/

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Center for Assistive Technology and Environmental Access

Teléfono: 404-894-4960 Correo electrónico: [email protected] Fax: 404-894-9320

https://rarediseases.org/es/organizations/center-for-assistive-technology-and-environmental-access/

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Center for Chronic Illness

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/center-for-chronic-illness/

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Center For Disfigurement

Teléfono: 757-437-8900 Correo electrónico: [email protected] Fax: 757-437-8200

https://rarediseases.org/es/organizations/center-for-disfigurement/

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Center for Hope

Teléfono: 203-869-4848 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/center-for-hope/

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Center for Housing and New Community Economics (CHANCE)

Teléfono: 603-862-4320 Correo electrónico: [email protected] Fax: 603-862-0982

https://rarediseases.org/es/organizations/center-for-housing-and-new-community-economics-chance/

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Center for Information and Study on Clinical Research Participation

Teléfono: 617-725-2750 Correo electrónico: [email protected] Fax: 617-725-2753

https://rarediseases.org/es/organizations/center-for-information-and-study-on-clinical-research-participation/

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Center for International Blood and Marrow Transplant Research

Teléfono: 414-805-0700 Correo electrónico: [email protected] Fax: 414-805-0714

Enfermedades raras relacionadas: Hyper IgM Syndromes, X linked Lymphoproliferative Syndrome, Chronic Myelogenous Leukemia, ...

https://rarediseases.org/es/organizations/center-for-international-blood-and-marrow-transplant-research/

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Center For Loss In Multiple Birth, Inc.

Teléfono: 907-222-5321 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/center-for-loss-in-multiple-birth-inc/

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Center for Medical Genetics

Teléfono: 713-790-1990 Correo electrónico: [email protected] Fax: 713-790-1903

https://rarediseases.org/es/organizations/center-for-medical-genetics/

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Center for Narcolepsy, Sleep and Health Research

Teléfono: 312-996-5176 Correo electrónico: [email protected] Fax: 312-996-7008

Enfermedades raras relacionadas: Narcolepsy

https://rarediseases.org/es/organizations/center-for-narcolepsy-sleep-and-health-research/

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Center for Peripheral Neuropathy

Teléfono: 773-702-5659 Fax: 773-702-5577

Enfermedades raras relacionadas: Multifocal Motor Neuropathy, Hereditary Sensory and Autonomic Neuropathy Type 1E, Hereditary Neuralgic Amyotrophy, ...

https://rarediseases.org/es/organizations/center-for-peripheral-neuropathy/

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Center for Persons with Disabilities

Teléfono: 435-797-1981 Fax: 435-797-3944

https://rarediseases.org/es/organizations/center-for-persons-with-disabilities/

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Center for Research on Women with Disabilities

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/center-for-research-on-women-with-disabilities/

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Center for Sickle Cell Disease

Teléfono: 202-865-8292 Correo electrónico: [email protected] Fax: 202-806-4517

https://rarediseases.org/es/organizations/center-for-sickle-cell-disease/

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Center for Universal Design

Teléfono: 919-515-3082 Correo electrónico: [email protected] Fax: 919-515-8951

https://rarediseases.org/es/organizations/center-for-universal-design/

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Centers for Disease Control and Prevention

Teléfono: 404-639-3534 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Tularemia, Síndrome de Reye, Viruela, ...

https://rarediseases.org/es/organizations/centers-for-disease-control-and-prevention/

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CenterWatch, Inc.

Teléfono: 617-948-5100 Correo electrónico: [email protected] Fax: 617-948-5101

https://rarediseases.org/es/organizations/centerwatch-inc/

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Central Brain Tumor Registry of the United States

Teléfono: 630-655-4786 Correo electrónico: [email protected] Fax: 630-655-1756

https://rarediseases.org/es/organizations/central-brain-tumor-registry-of-the-united-states/

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Centre for Genetics Education

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/centre-for-genetics-education/

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CGD Society

Teléfono: 800-987-8988 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Enfermedad granulomatosa crónica

https://rarediseases.org/es/organizations/cgd-society/

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CHAMP1 Research Foundation

Miembro NORD

Teléfono: 813-600-7950 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Essential Thrombocythemia, Primary Myelofibrosis, Polycythemia Vera ...

https://rarediseases.org/es/organizations/champ1-research-foundation/

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Channeling Hope Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/channeling-hope-foundation/

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Charcot-Marie-Tooth Association (CMTA)

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Dejerine-Sottas Syndrome, Roussy Lévy Syndrome, Charcot-Marie-Tooth Disease ...

https://rarediseases.org/es/organizations/charcot-marie-tooth-association-cmta/

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CHARGE Family Support Group

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/charge-family-support-group/

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CHARGE Syndrome Foundation, Inc.

Teléfono: 516-684-4720 Correo electrónico: [email protected] Fax: 516-883-9060

Enfermedades raras relacionadas: Complete DiGeorge Syndrome, Atimia congénita, Síndrome CHARGE ...

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

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Charlotte & Gwenyth Gray Foundation to Cure Batten Disease at The Giving Back Fund

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/charlotte-gwenyth-gray-foundation-to-cure-batten-disease-at-the-giving-back-fund/

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Charlotte & Gwenyth Gray Foundation to Cure Batten Disease

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Juvenile CLN3 Disease

https://rarediseases.org/es/organizations/charlotte-gwenyth-gray-foundation-to-cure-batten-disease/

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CHD3 Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/chd3-foundation/

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Chelsea’s Hope Lafora Children Research Fund

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Enfermedad de Lafora

https://rarediseases.org/es/organizations/chelseas-hope-lafora-children-research-fund/

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Chemical Injury Information Network

Teléfono: 406-547-2255 Correo electrónico: [email protected] Fax: 406-547-2455

https://rarediseases.org/es/organizations/chemical-injury-information-network/

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CHES Foundation, Inc

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Factor VII Deficiency, Trombastenia de Glanzmann

https://rarediseases.org/es/organizations/ches-foundation-inc/

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Cheyanna’s Champions 4 Children

https://rarediseases.org/es/organizations/cheyannas-champions-4-children/

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Cheyanna’s Champions for Children

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/cheyannas-champions-for-children/

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Child and Youth Care Zimbabwe

Miembro NORD

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/child-and-youth-care-zimbabwe/

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Child Brain Injury Trust

Teléfono: 186-934-1075 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Meningitis, Meningococcal Meningitis

https://rarediseases.org/es/organizations/child-brain-injury-trust/

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Child Growth Foundation

Enfermedades raras relacionadas: Craniopharyngioma, Congenital Adrenal Hyperplasia, Growth Hormone Deficiency, ...

https://rarediseases.org/es/organizations/child-growth-foundation/

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Child Neurology Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: STXBP1 Disorders, Deficiencia de GM3 sintasa, Síndromes de deficiencia de creatina cerebral, ...

https://rarediseases.org/es/organizations/child-neurology-foundation/

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