Patient Organizations - Page 7 of 48 - National Organization for Rare Disorders

Bardet Biedl Syndrome Family Association

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Bardet-Biedl Syndrome, Síndrome de Bardet-Biedl

https://rarediseases.org/es/organizations/bardet-biedl-syndrome-family-association/

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Barth Syndrome Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Barth Syndrome

https://rarediseases.org/es/organizations/barth-syndrome-foundation/

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BC Neurofibromatosis Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: NF2-Related Schwannomatosis, Neurofibromatosis 1, Neurofibromatosis 1, ...

https://rarediseases.org/es/organizations/bc-neurofibromatosis-foundation/

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BCC-RUD

https://rarediseases.org/es/organizations/bcc-rud/

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BCM Families Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: BCM Families Foundation

https://rarediseases.org/es/organizations/bcm-families-foundation/

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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/

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Be the Match Registry

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Graft versus Host Disease

https://rarediseases.org/es/organizations/be-the-match-registry/

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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/

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Beat NB

https://rarediseases.org/es/organizations/beat-nb/

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BeatSarcoma

Teléfono: 415-826-0474 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Soft Tissue Sarcoma, Osteosarcoma, Liposarcoma, ...

https://rarediseases.org/es/organizations/beatsarcoma/

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Beautiful You MRKH Foundation, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Mayer-Rokitansky-Küster-Hauser Syndrome

https://rarediseases.org/es/organizations/beautiful-you-mrkh-foundation-inc/

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Beck-Fahrner Syndrome Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/beck-fahrner-syndrome-foundation/

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Beckwith-Wiedemann Children’s Foundation International

Teléfono: 425-338-4610 Correo electrónico: [email protected] Fax: 425-357-8575

Enfermedades raras relacionadas: Beckwith-Wiedemann Syndrome, Síndrome de Beckwith-Wiedemann

https://rarediseases.org/es/organizations/beckwith-wiedemann-childrens-foundation-international/

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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/

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Belgian Association for Metabolic Diseases

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Porphyrias, Pompe Disease, Enfermedad de Pompe, ...

https://rarediseases.org/es/organizations/belgian-association-for-metabolic-diseases/

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Benefits in Action

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/benefits-in-action/

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Benign Essential Blepharospasm Canadian Research Foundation, Inc.

Teléfono: 905-264-0708 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Meige Syndrome, Benign Essential Blepharospasm, Blefaroespasmo esencial benigno ...

https://rarediseases.org/es/organizations/benign-essential-blepharospasm-canadian-research-foundation-inc/

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Benign Essential Blepharospasm Research Foundation, Inc

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Benign Essential Blepharospasm, Blefaroespasmo esencial benigno

https://rarediseases.org/es/organizations/benign-essential-blepharospasm-research-foundation-inc-2/

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Benign Essential Blepharospasm Research Foundation, Inc.

Teléfono: 409-832-0788 Correo electrónico: [email protected] Fax: 409-832-0890

Enfermedades raras relacionadas: Meige Syndrome, Benign Essential Blepharospasm, Blefaroespasmo esencial benigno ...

https://rarediseases.org/es/organizations/benign-essential-blepharospasm-research-foundation-inc/

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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/

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Better Hearing Institute

Teléfono: 202-449-1100 Correo electrónico: [email protected] Fax: 703-684-6048

Enfermedades raras relacionadas: Meier-Gorlin Syndrome, Björnstad Syndrome, Rosenberg Chutorian Syndrome, ...

https://rarediseases.org/es/organizations/better-hearing-institute/

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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/

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Beyond Celiac

Teléfono: 215-325-1306 Correo electrónico: [email protected] Fax: 215-643-1707

Enfermedades raras relacionadas: Refractory Celiac Disease, Celiac Disease, Dermatitis Herpetiformis ...

https://rarediseases.org/es/organizations/beyond-celiac/

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Beyond Primrose ZBTB20 Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/beyond-primrose-zbtb20-foundation/

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BHD Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Hereditary Leiomyomatosis and Renal Cell Carcinoma, Birt-Hogg-Dubé Syndrome, Síndrome de Birt-Hogg-Dubé ...

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

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Bili Project Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Cholangiocarcinoma, Colangiocarcinoma

https://rarediseases.org/es/organizations/bili-project-foundation/

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BioMed Central Ltd

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/biomed-central-ltd/

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BioPontis Alliance for Rare Disease

https://rarediseases.org/es/organizations/biopontis-alliance-for-rare-disease/

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Birdshot Uveitis Society of North America

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/birdshot-uveitis-society-of-north-america/

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Birth Defect Research for Children, Inc.

Teléfono: 407-895-0802 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Potter Syndrome, Trisomy 9p (Multiple Variants), Sporadic Porencephaly, ...

https://rarediseases.org/es/organizations/birth-defect-research-for-children-inc/

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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/

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Bisous For Léo

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/bisous-for-leo/

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Black Women’s Health Imperative

https://rarediseases.org/es/organizations/black-womens-health-imperative/

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Bladder Exstrophy Research Foundation

Teléfono: 949-922-9865 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/bladder-exstrophy-research-foundation/

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Blanche Fischer Foundation

Teléfono: 503-246-4941 Correo electrónico: [email protected] Fax: 503-246-4941

https://rarediseases.org/es/organizations/blanche-fischer-foundation/

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Blepharospasm Australia Inc.

Enfermedades raras relacionadas: Meige Syndrome, Benign Essential Blepharospasm, Blefaroespasmo esencial benigno ...

https://rarediseases.org/es/organizations/blepharospasm-australia-inc/

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Blind Children’s Center

Teléfono: 323-664-2153 Correo electrónico: [email protected] Fax: 323-665-3828

Enfermedades raras relacionadas: Senior-Løken Syndrome, Alström Syndrome, Keratomalacia, ...

https://rarediseases.org/es/organizations/blind-childrens-center/

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Blind Citizens Australia

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/blind-citizens-australia/

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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/

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Blood Cancer United

Fax: 914-949-6691

Enfermedades raras relacionadas: Acute Promyelocytic Leukemia, Primary Central Nervous System Lymphoma, Post-Transplant Lymphoproliferative Disease, ...

https://rarediseases.org/es/organizations/bloodcancerunited/

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Bloom Syndrome Association

Miembro NORD

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/bloom-syndrome-association/

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Bloom’s Syndrome Association, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Bloom Syndrome

https://rarediseases.org/es/organizations/blooms-syndrome-association-inc/

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Bloom’s Syndrome Registry

Teléfono: 212-746-3956 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Bloom Syndrome

https://rarediseases.org/es/organizations/blooms-syndrome-registry/

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Blue Faery: The Adrienne Wilson Liver Cancer Association

https://rarediseases.org/es/organizations/blue-faery-the-adrienne-wilson-liver-cancer-association/

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BLUES GIFT FOUNDATION

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/blues-gift-foundation/

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Blum Family Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/blum-family-foundation/

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Bobby Jones Chiari & Syringomyelia Foundation

Enfermedades raras relacionadas: Idiopathic Intracranial Hypertension, Syringomyelia, Chiari Malformations, ...

https://rarediseases.org/es/organizations/bobby-jones-chiari-syringomyelia-foundation/

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Boggy Creek Gang

Teléfono: 352-483-4200 Correo electrónico: [email protected] Fax: 352-483-0589

https://rarediseases.org/es/organizations/boggy-creek-gang/

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Bohring-Opitz Syndrome Foundation, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Bohring-Opitz Syndrome

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

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Bone Marrow Foundation

Teléfono: 212-838-3029 Correo electrónico: [email protected] Fax: 212-223-0081

https://rarediseases.org/es/organizations/bone-marrow-foundation/

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