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Home / Patient Organizations / Patient Organizations
Barth Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Barth Syndrome
https://rarediseases.org/es/organizations/barth-syndrome-foundation/
Ver perfil >
BC Neurofibromatosis Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Neurofibromatosis 1, Schwannomatosis relacionada con NF2
https://rarediseases.org/es/organizations/bc-neurofibromatosis-foundation/
Ver perfil >
BCC-RUD
https://rarediseases.org/es/organizations/bcc-rud/
Ver perfil >
BCM Families Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: BCM Families Foundation
https://rarediseases.org/es/organizations/bcm-families-foundation/
Ver perfil >
BDSRA Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Juvenile CLN3 Disease, Adult Neuronal Ceroid Lipofuscinosis
https://rarediseases.org/es/organizations/bdsra-foundation/
Ver perfil >
Be the Match Registry
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Graft versus Host Disease
https://rarediseases.org/es/organizations/be-the-match-registry/
Ver perfil >
Bear Necessities Pediatric Cancer Foundation
Teléfono: 312-214-1200 Correo electrónico: [email protected] Fax: 312-214-7797
https://rarediseases.org/es/organizations/bear-necessities-pediatric-cancer-foundation/
Ver perfil >
Beat NB
https://rarediseases.org/es/organizations/beat-nb/
Ver perfil >
BeatSarcoma
Teléfono: 415-826-0474 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Blastoma pleuropulmonar, Sarcoma alveolar de partes blandas, Mesenchymal Chondrosarcoma, ...
https://rarediseases.org/es/organizations/beatsarcoma/
Ver perfil >
Beautiful You MRKH Foundation, Inc.
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Mayer Rokitansky Küster Hauser
https://rarediseases.org/es/organizations/beautiful-you-mrkh-foundation-inc/
Ver perfil >
Beck-Fahrner Syndrome Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/beck-fahrner-syndrome-foundation/
Ver perfil >
Beckwith-Wiedemann Children’s Foundation International
Teléfono: 425-338-4610 Correo electrónico: [email protected] Fax: 425-357-8575
Enfermedades raras relacionadas: Síndrome de Beckwith-Wiedemann
https://rarediseases.org/es/organizations/beckwith-wiedemann-childrens-foundation-international/
Ver perfil >
Behavior Education Training Associates
Teléfono: 415-564-7830 Correo electrónico: [email protected] Fax: 415-242-1302
https://rarediseases.org/es/organizations/behavior-education-training-associates/
Ver perfil >
Belgian Association for Metabolic Diseases
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de Pompe, Porfirias
https://rarediseases.org/es/organizations/belgian-association-for-metabolic-diseases/
Ver perfil >
Benefits in Action
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/benefits-in-action/
Ver perfil >
Benign Essential Blepharospasm Canadian Research Foundation, Inc.
Teléfono: 905-264-0708 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Meige Syndrome, Blefaroespasmo esencial benigno
https://rarediseases.org/es/organizations/benign-essential-blepharospasm-canadian-research-foundation-inc/
Ver perfil >
Benign Essential Blepharospasm Research Foundation, Inc
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Blefaroespasmo esencial benigno
https://rarediseases.org/es/organizations/benign-essential-blepharospasm-research-foundation-inc-2/
Ver perfil >
Benign Essential Blepharospasm Research Foundation, Inc.
Teléfono: 409-832-0788 Correo electrónico: [email protected] Fax: 409-832-0890
Enfermedades raras relacionadas: Meige Syndrome, Blefaroespasmo esencial benigno
https://rarediseases.org/es/organizations/benign-essential-blepharospasm-research-foundation-inc/
Ver perfil >
Bernard-Soulier Syndrome Website and Registry
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Bernard-Soulier Syndrome
https://rarediseases.org/es/organizations/bernard-soulier-syndrome-website-and-registry/
Ver perfil >
Better Hearing Institute
Teléfono: 202-449-1100 Correo electrónico: [email protected] Fax: 703-684-6048
Enfermedades raras relacionadas: Meier-Gorlin Syndrome, Neurinoma acústico, Rosenberg Chutorian Syndrome, ...
https://rarediseases.org/es/organizations/better-hearing-institute/
Ver perfil >
Beyond Batten Disease Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Classic Infantile CLN1 Disease, Juvenile CLN3 Disease
https://rarediseases.org/es/organizations/beyond-batten-disease-foundation/
Ver perfil >
Beyond Celiac
Teléfono: 215-325-1306 Correo electrónico: [email protected] Fax: 215-643-1707
Enfermedades raras relacionadas: Enfermedad Celíaca Refractaria, Celiac Disease, Dermatitis Herpetiformis ...
https://rarediseases.org/es/organizations/beyond-celiac/
Ver perfil >
Beyond Primrose ZBTB20 Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/beyond-primrose-zbtb20-foundation/
Ver perfil >
BHD Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Leiomiomatosis hereditaria y carcinoma de células renales, Síndrome de Birt-Hogg-Dubé
https://rarediseases.org/es/organizations/bhd-foundation/
Ver perfil >
Bili Project Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Colangiocarcinoma
https://rarediseases.org/es/organizations/bili-project-foundation/
Ver perfil >
BioMed Central Ltd
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/biomed-central-ltd/
Ver perfil >
BioPontis Alliance for Rare Disease
https://rarediseases.org/es/organizations/biopontis-alliance-for-rare-disease/
Ver perfil >
Birdshot Uveitis Society of North America
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/birdshot-uveitis-society-of-north-america/
Ver perfil >
Birth Defect Research for Children, Inc.
Teléfono: 407-895-0802 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome CHARGE, Enfermedad de los Pequeños Vasos Cerebrales 1 con o sin Anomalías Oculares, Síndrome de Potter, ...
https://rarediseases.org/es/organizations/birth-defect-research-for-children-inc/
Ver perfil >
Birth to Three Developmental Center
Teléfono: 253-874-5445 Correo electrónico: [email protected] Fax: 253-874-0687
https://rarediseases.org/es/organizations/birth-to-three-developmental-center/
Ver perfil >
Bisous For Léo
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/bisous-for-leo/
Ver perfil >
Black Women’s Health Imperative
https://rarediseases.org/es/organizations/black-womens-health-imperative/
Ver perfil >
Bladder Exstrophy Research Foundation
Teléfono: 949-922-9865 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/bladder-exstrophy-research-foundation/
Ver perfil >
Blanche Fischer Foundation
Teléfono: 503-246-4941 Correo electrónico: [email protected] Fax: 503-246-4941
https://rarediseases.org/es/organizations/blanche-fischer-foundation/
Ver perfil >
Blepharospasm Australia Inc.
Enfermedades raras relacionadas: Meige Syndrome, Blefaroespasmo esencial benigno
https://rarediseases.org/es/organizations/blepharospasm-australia-inc/
Ver perfil >
Blind Children’s Center
Teléfono: 323-664-2153 Correo electrónico: [email protected] Fax: 323-665-3828
Enfermedades raras relacionadas: Retinitis Pigmentaria, Alström Syndrome, Keratomalacia, ...
https://rarediseases.org/es/organizations/blind-childrens-center/
Ver perfil >
Blind Citizens Australia
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/blind-citizens-australia/
Ver perfil >
Blood & Marrow Transplant Information Network
Teléfono: 847-433-3313 Correo electrónico: [email protected] Fax: 847-433-4599
https://rarediseases.org/es/organizations/blood-marrow-transplant-information-network/
Ver perfil >
Blood Cancer United
Fax: 914-949-6691
Enfermedades raras relacionadas: Linfoma gástrico primario, Trastorno plaquetario familiar con neoplasia mieloide asociada, Linfoma de células del manto, ...
https://rarediseases.org/es/organizations/bloodcancerunited/
Ver perfil >
Bloom Syndrome Association
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/bloom-syndrome-association/
Ver perfil >
Bloom’s Syndrome Association, Inc.
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Bloom
https://rarediseases.org/es/organizations/blooms-syndrome-association-inc/
Ver perfil >
Bloom’s Syndrome Registry
Teléfono: 212-746-3956 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Bloom
https://rarediseases.org/es/organizations/blooms-syndrome-registry/
Ver perfil >
Blue Faery: The Adrienne Wilson Liver Cancer Association
https://rarediseases.org/es/organizations/blue-faery-the-adrienne-wilson-liver-cancer-association/
Ver perfil >
BLUES GIFT FOUNDATION
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/blues-gift-foundation/
Ver perfil >
Blum Family Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/blum-family-foundation/
Ver perfil >
Bobby Jones Chiari & Syringomyelia Foundation
Enfermedades raras relacionadas: Idiopathic Intracranial Hypertension, Syringomyelia, Chiari Malformations, ...
https://rarediseases.org/es/organizations/bobby-jones-chiari-syringomyelia-foundation/
Ver perfil >
Boggy Creek Gang
Teléfono: 352-483-4200 Correo electrónico: [email protected] Fax: 352-483-0589
https://rarediseases.org/es/organizations/boggy-creek-gang/
Ver perfil >
Bohring-Opitz Syndrome Foundation, Inc.
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Bohring-Opitz
https://rarediseases.org/es/organizations/bohring-opitz-syndrome-foundation-inc/
Ver perfil >
Bone Marrow Foundation
Teléfono: 212-838-3029 Correo electrónico: [email protected] Fax: 212-223-0081
https://rarediseases.org/es/organizations/bone-marrow-foundation/
Ver perfil >
Bonnell Foundation: Living with Cystic Fibrosis
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Fibrosis quística
https://rarediseases.org/es/organizations/bonnell-foundation-living-with-cystic-fibrosis/
Ver perfil >
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