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Home / Patient Organizations / Patient Organizations
CenterWatch, Inc.
Teléfono: 617-948-5100 Correo electrónico: [email protected] Fax: 617-948-5101
https://rarediseases.org/es/organizations/centerwatch-inc/
Ver perfil >
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/
Ver perfil >
Centre for Genetics Education
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/centre-for-genetics-education/
Ver perfil >
CGD Society
Teléfono: 800-987-8988 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad granulomatosa crónica
https://rarediseases.org/es/organizations/cgd-society/
Ver perfil >
CHAMP1 Research Foundation
Miembro NORD
Teléfono: 813-600-7950 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Policitemia Vera, Mielofibrosis primaria
https://rarediseases.org/es/organizations/champ1-research-foundation/
Ver perfil >
Channeling Hope Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/channeling-hope-foundation/
Ver perfil >
Channeling Hope Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/channeling-hope-foundation-2/
Ver perfil >
Charcot-Marie-Tooth Association (CMTA)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Dejerine-Sottas Syndrome, Trastornos relacionados con CHCHD10, Roussy Lévy Syndrome, ...
https://rarediseases.org/es/organizations/charcot-marie-tooth-association-cmta/
Ver perfil >
CHARGE Family Support Group
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/charge-family-support-group/
Ver perfil >
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/
Ver perfil >
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/
Ver perfil >
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/
Ver perfil >
CHD3 Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/chd3-foundation/
Ver perfil >
Chelsea’s Hope Lafora Children Research Fund
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/chelseas-hope-lafora-children-research-fund-2/
Ver perfil >
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/
Ver perfil >
CHES Foundation, Inc
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Factor VII Deficiency, Trombastenia de Glanzmann
https://rarediseases.org/es/organizations/ches-foundation-inc/
Ver perfil >
Cheyanna’s Champions 4 Children
https://rarediseases.org/es/organizations/cheyannas-champions-4-children/
Ver perfil >
Cheyanna’s Champions for Children
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/cheyannas-champions-for-children/
Ver perfil >
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/
Ver perfil >
Child Growth Foundation
Enfermedades raras relacionadas: Craneofaringioma, Congenital Adrenal Hyperplasia, Growth Hormone Deficiency, ...
https://rarediseases.org/es/organizations/child-growth-foundation/
Ver perfil >
Child Neurology Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de GM3 sintasa, Síndromes de deficiencia de creatina cerebral, Síndrome de Kufor Rakeb, ...
https://rarediseases.org/es/organizations/child-neurology-foundation/
Ver perfil >
Childhood Arthritis and Rheumatology Research Alliance
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/childhood-arthritis-and-rheumatology-research-alliance/
Ver perfil >
Childhood Cancer Association, Inc.
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/childhood-cancer-association-inc/
Ver perfil >
Childhood Cancer Canada Foundation
Teléfono: 416-489-6440 Correo electrónico: [email protected] Fax: 416-489-9812
Enfermedades raras relacionadas: Glioma, Anaplastic Astrocytoma, Tumor de Wilms ...
https://rarediseases.org/es/organizations/childhood-cancer-canada-foundation/
Ver perfil >
Childhood Dementia Initiative
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/childhood-dementia-initiative/
Ver perfil >
Childhood Eye Cancer Trust
Teléfono: 207-377-5578 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Retinoblastoma
https://rarediseases.org/es/organizations/childhood-eye-cancer-trust/
Ver perfil >
Childhood Liver Disease Research and Education Network
Teléfono: 720-777-2598 Correo electrónico: [email protected] Fax: 720-777-7351
Enfermedades raras relacionadas: Bile Acid Synthesis Disorders, Deficiencia de Piruvato Carboxilasa, Deficiencia de TRMU, ...
https://rarediseases.org/es/organizations/childhood-liver-disease-research-and-education-network/
Ver perfil >
Childre Hospital Rare Disease Institute
https://rarediseases.org/es/organizations/childre-hospital-rare-disease-institute/
Ver perfil >
Children with Spinal Muscular Atrophy, Ukraine – Kharkiv Charitable Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Werdnig-Hoffmann Disease, Atrofia muscular espinal
https://rarediseases.org/es/organizations/children-with-spinal-muscular-atrophy-ukraine-kharkiv-charitable-foundation/
Ver perfil >
Children’s Brain Diseases Foundation
Teléfono: 415-665-3003 Correo electrónico: [email protected] Fax: 415-665-3003
Enfermedades raras relacionadas: PHACE Syndrome, Classic Infantile CLN1 Disease, Leigh Syndrome, ...
https://rarediseases.org/es/organizations/childrens-brain-diseases-foundation/
Ver perfil >
Children’s Brain Tumor Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Glioblastoma, Glioma, Craneofaringioma, ...
https://rarediseases.org/es/organizations/childrens-brain-tumor-foundation/
Ver perfil >
Children’s Brittle Bone Foundation
Teléfono: 866-694-2223 Correo electrónico: [email protected] Fax: 262-947-0724
Enfermedades raras relacionadas: Osteogénesis imperfecta
https://rarediseases.org/es/organizations/childrens-brittle-bone-foundation/
Ver perfil >
Children’s Cancer & Blood Foundation
Teléfono: 212-297-4336 Correo electrónico: [email protected] Fax: 212-297-4340
Enfermedades raras relacionadas: Factor VII Deficiency, Hemofilia B adquirida, Acquired Hemophilia A, ...
https://rarediseases.org/es/organizations/childrens-cancer-blood-foundation/
Ver perfil >
Children’s Cardiomyopathy Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Pediatric Cardiomyopathy, Trastornos relacionados con NDUFB11, Titinopatía recesiva ...
https://rarediseases.org/es/organizations/childrens-cardiomyopathy-foundation/
Ver perfil >
Children’s Craniofacial Association (CCA)
Miembro NORD
Teléfono: 214-570-9099 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome trico-dento-óseo, Síndrome de Treacher Collins, Síndrome de megalocórnea-discapacidad intelectual, ...
https://rarediseases.org/es/organizations/childrens-craniofacial-association-cca/
Ver perfil >
Children’s Fund for Glycogen Storage Disease Research, Inc.
Teléfono: 203-272-2873 Correo electrónico: [email protected] Fax: 203-272-6695
Enfermedades raras relacionadas: Glycogen Storage Disease Type VI, Glycogen Storage Disease Type 7, Glycogen Storage Disease Type IX, ...
https://rarediseases.org/es/organizations/childrens-fund-for-glycogen-storage-disease-research-inc/
Ver perfil >
Children’s Gaucher Research Fund
Teléfono: 916-797-3700 Correo electrónico: [email protected] Fax: 916-797-3707
https://rarediseases.org/es/organizations/childrens-gaucher-research-fund/
Ver perfil >
Children’s Glaucoma Foundation
Teléfono: 617-277-3011 Correo electrónico: [email protected] Fax: 617-227-9538
Enfermedades raras relacionadas: Weill-Marchesani Syndrome
https://rarediseases.org/es/organizations/childrens-glaucoma-foundation/
Ver perfil >
Children’s Heart Society
Teléfono: 780-454-7665 Correo electrónico: [email protected]
Enfermedades raras relacionadas: PHACE Syndrome
https://rarediseases.org/es/organizations/childrens-heart-society/
Ver perfil >
Children’s Hospice International
Teléfono: 703-684-0330 Correo electrónico: [email protected] Fax: 703-684-0226
https://rarediseases.org/es/organizations/childrens-hospice-international/
Ver perfil >
Children’s Hospital of Philadelphia Neurofibromatosis Program
Enfermedades raras relacionadas: Neurofibromatosis 1
https://rarediseases.org/es/organizations/childrens-hospital-of-philadelphia-neurofibromatosis-program/
Ver perfil >
Children’s Interstitial and Diffuse Lung Disease (chILD) Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/childrens-interstitial-and-diffuse-lung-disease-child-foundation/
Ver perfil >
Children’s Interstitial Lung Disease Foundation
Teléfono: 513-459-0127
Enfermedades raras relacionadas: Enfermedad Pulmonar Intersticial Debido a la Deficiencia de la Proteína Surfactante B, Enfermedad pulmonar intersticial debido a deficiencia de proteína C surfactante, Síndrome COPA, ...
https://rarediseases.org/es/organizations/childrens-interstitial-lung-disease-foundation/
Ver perfil >
Children’s Leukemia Research Association
Teléfono: 516-222-1944 Correo electrónico: [email protected] Fax: 516-222-0457
Enfermedades raras relacionadas: Acute Myeloid Leukemia, Juvenile Myelomonocytic Leukemia, Chronic Lymphocytic Leukemia, ...
https://rarediseases.org/es/organizations/childrens-leukemia-research-association/
Ver perfil >
Children’s Liver Association for Support Services (C.L.A.S.S.)
Teléfono: 661-263-9099 Correo electrónico: [email protected] Fax: 661-263-9099
Enfermedades raras relacionadas: Low Gamma-GT Familial Intrahepatic Cholestasis, Alagille Syndrome, Biliary Atresia, ...
https://rarediseases.org/es/organizations/childrens-liver-association-for-support-services-c-l-a-s-s/
Ver perfil >
Children’s Liver Disease Foundation
Teléfono: 121-212-3839 Correo electrónico: [email protected] Fax: 121-212-4300
Enfermedades raras relacionadas: Congenital Hepatic Fibrosis, Low Gamma-GT Familial Intrahepatic Cholestasis, Neonatal Hemochromatosis, ...
https://rarediseases.org/es/organizations/childrens-liver-disease-foundation/
Ver perfil >
Children’s Mitochondrial Disease Network
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Maternally Inherited Leigh Syndrome and NARP Syndrome, Síndrome de MERRF, Síndrome de MELAS, ...
https://rarediseases.org/es/organizations/childrens-mitochondrial-disease-network/
Ver perfil >
Children’s Neurobiological Solutions Foundation
Teléfono: 301-889-8611 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/childrens-neurobiological-solutions-foundation/
Ver perfil >
Children’s Organ Transplant Association, Inc.
Teléfono: 812-336-8872 Correo electrónico: [email protected] Fax: 812-336-8885
https://rarediseases.org/es/organizations/childrens-organ-transplant-association-inc/
Ver perfil >
Children’s PKU Network
Teléfono: 858-775-9978 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Phenylketonuria
https://rarediseases.org/es/organizations/childrens-pku-network/
Ver perfil >
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