Patient Organizations - Page 46 of 48 - National Organization for Rare Disorders

UCSF Hemophilia Treatment Center

Teléfono: 415-476-1280 Correo electrónico: [email protected] Fax: 415-353-2600

https://rarediseases.org/es/organizations/ucsf-hemophilia-treatment-center/

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UCSF Memory and Aging Center

Correo electrónico: [email protected] Fax: 415-476-4800

Enfermedades raras relacionadas: Corticobasal Degeneration, Progressive Supranuclear Palsy, Alzheimer’s Disease, ...

https://rarediseases.org/es/organizations/ucsf-memory-and-aging-center/

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UCSF Pulmonary Hypertension Clinic

Teléfono: 415-353-2873 Correo electrónico: [email protected] Fax: 415-353-2127

https://rarediseases.org/es/organizations/ucsf-pulmonary-hypertension-clinic/

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UKD Foundation

Enfermedades raras relacionadas: Autosomal Dominant Tubulo-Interstitial Kidney Disease

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

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Understanding Cancer Immunotherapy Research

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/understanding-cancer-immunotherapy-research/

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Undiagnosed Diseases Network Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/undiagnosed-diseases-network-foundation/

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UNIQUE – Rare Chromosome Disorder Support Group

Correo electrónico: [email protected]

Enfermedades raras relacionadas: ADNP Syndrome, KAT6A Syndrome, Dup15q Syndrome, ...

https://rarediseases.org/es/organizations/unique-rare-chromosome-disorder-support-group/

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United Brachial Plexus Network

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Thoracic Outlet Syndrome

https://rarediseases.org/es/organizations/united-brachial-plexus-network/

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United Cerebral Palsy

Teléfono: 202-776-0414 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Cerebral Palsy

https://rarediseases.org/es/organizations/united-cerebral-palsy/

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United Leukodystrophy Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia, Cerebral Folate Deficiency, Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation, ...

https://rarediseases.org/es/organizations/united-leukodystrophy-foundation/

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United Mitochondrial Disease Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Pyruvate Dehydrogenase Complex Deficiency, Primary Mitochondrial Myopathies, Arginine: Glycine Amidinotransferase Deficiency, ...

https://rarediseases.org/es/organizations/united-mitochondrial-disease-foundation/

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United MSD Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Multiple Sulfatase Deficiency

https://rarediseases.org/es/organizations/united-msd-foundation/

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United Pompe Foundation

Teléfono: 559-227-1898 Correo electrónico: [email protected] Fax: 559-227-1898

Enfermedades raras relacionadas: Pompe Disease, Enfermedad de Pompe

https://rarediseases.org/es/organizations/united-pompe-foundation/

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United Porphyrias Association

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Acute Intermittent Porphyria, ALAD Porphyria, Erythropoietic Protoporphyria and X-Linked Protoporphyria, ...

https://rarediseases.org/es/organizations/united-porphyrias-association/

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United Porphyrias Association

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Hepatoerythropoietic Porphyria, X-Linked Protoporphyria, Porphyrias, ...

https://rarediseases.org/es/organizations/american-porphyria-foundation-apf/

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United Self-Help (Hawaii)

Correo electrónico: [email protected] Fax: 808-931-6448

https://rarediseases.org/es/organizations/united-self-help-hawaii/

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United Spinal Association

Teléfono: 718-803-3782 Correo electrónico: [email protected] Fax: 718-803-0414

https://rarediseases.org/es/organizations/united-spinal-association/

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United States Access Board

Teléfono: 202-272-0020 Correo electrónico: [email protected] Fax: 202-272-0081

https://rarediseases.org/es/organizations/united-states-access-board/

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United States Adult Cystic Fibrosis Association, Inc.

Teléfono: 503-669-3561 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/united-states-adult-cystic-fibrosis-association-inc/

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United States Bone and Joint Decade

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/united-states-bone-and-joint-decade/

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United States Department of Health and Human Services

https://rarediseases.org/es/organizations/united-states-department-of-health-and-human-services/

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United States Society for Augmentative and Alternative Communication

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Locked In Syndrome

https://rarediseases.org/es/organizations/united-states-society-for-augmentative-and-alternative-communication/

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United Survivors with Epidermolysis Bullosa

Teléfono: 801-319-0160 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/united-survivors-with-epidermolysis-bullosa/

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United Way Information & Referral Services

Teléfono: 713-957-4357 Correo electrónico: [email protected] Fax: 281-582-7774

https://rarediseases.org/es/organizations/united-way-information-referral-services/

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University of Southern California Medical Center

Fax: 323-442-8672

https://rarediseases.org/es/organizations/university-of-southern-california-medical-center/

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University of Texas Medical Branch at Galveston

Teléfono: 409-772-2222 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/university-of-texas-medical-branch-at-galveston/

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University of Toronto

Teléfono: 416-946-2973 Correo electrónico: [email protected] Fax: 416-946-2050

https://rarediseases.org/es/organizations/university-of-toronto/

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Uplifting Athletes

Miembro NORD

Teléfono: 717-737-7900 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/uplifting-athletes/

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Urea Cycle Disorders Consortium

Correo electrónico: [email protected]

Enfermedades raras relacionadas: N-Acetylglutamate Synthetase Deficiency, Arginase-1 Deficiency, Argininosuccinic Aciduria, ...

https://rarediseases.org/es/organizations/urea-cycle-disorders-consortium/

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Urology Care Foundation

Teléfono: 410-689-3700 Correo electrónico: [email protected] Fax: 410-689-3896

Enfermedades raras relacionadas: Testicular Cancer, Senior-Løken Syndrome, Renal Cell Carcinoma, ...

https://rarediseases.org/es/organizations/urology-care-foundation/

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US Hereditary Angioedema Association

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Hereditary Angioedema

https://rarediseases.org/es/organizations/us-hereditary-angioedema-association/

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US MEF2C Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: MEF2C Deficiency

https://rarediseases.org/es/organizations/us-mef2c-foundation/

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Us Pain Foundation Ambassador, Rhode Islan

https://rarediseases.org/es/organizations/us-pain-foundation-ambassador-rhode-islan/

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Usher III Initiative, Inc

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Usher Syndrome, Síndrome de Usher

https://rarediseases.org/es/organizations/usher-iii-initiative-inc/

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Usher Syndrome Coalition

Miembro NORD

Teléfono: 800-946-9203 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Usher Syndrome, Síndrome de Usher

https://rarediseases.org/es/organizations/usher-syndrome-coalition/

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V.I.N.E.S.

https://rarediseases.org/es/organizations/v-i-n-e-s/

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Vaincre Les Maladies Lysosomales

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Mucopolysaccharidosis Type I, Tay Sachs Disease, Pycnodysostosis, ...

https://rarediseases.org/es/organizations/vaincre-les-maladies-lysosomales/

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Vanderbilt’s Autonomic Dysfunction Center

Teléfono: 615-322-5000 Correo electrónico: [email protected] Fax: 615-343-8649

https://rarediseases.org/es/organizations/vanderbilts-autonomic-dysfunction-center/

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Variety – The Children’s Charity of the United States

Teléfono: 323-954-0820 Correo electrónico: [email protected] Fax: 323-954-8630

https://rarediseases.org/es/organizations/variety-the-childrens-charity-of-the-united-states/

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Vascular Birthmarks Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: PIK3CA-Related Overgrowth Spectrum, PHACE Syndrome, Megalencephaly-Capillary Malformation, ...

https://rarediseases.org/es/organizations/vascular-birthmarks-foundation/

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Vascular Cures

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Fibromuscular Dysplasia, Buerger’s Disease, Vasculitis, ...

https://rarediseases.org/es/organizations/vascular-cures/

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Vasculitis Foundation

Miembro NORD

Teléfono: 816-436-8211 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Perniosis, Mixed Cryoglobulinemia, Buerger’s Disease, ...

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

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Vereniging voor Kinder met Stofwisselingsziekten

Correo electrónico: [email protected]

Enfermedades raras relacionadas: MELAS Syndrome

https://rarediseases.org/es/organizations/vereniging-voor-kinder-met-stofwisselingsziekten/

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Vermont Assembly of Home Health Agencies

Teléfono: 802-229-0579 Correo electrónico: [email protected] Fax: 802-223-6218

https://rarediseases.org/es/organizations/vermont-assembly-of-home-health-agencies/

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Vermont Legal Aid

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/vermont-legal-aid/

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Vestibular Disorders Association

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Superior Semicircular Canal Dehiscence, Mal de Debarquement, Benign Paroxysmal Positional Vertigo, ...

https://rarediseases.org/es/organizations/vestibular-disorders-association/

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VEXAS Global Foundation

Miembro NORD

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/vexas-global-foundation/

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VHL Alliance

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Von Hippel-Lindau Disease

https://rarediseases.org/es/organizations/vhl-alliance/

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Virginia Commonwealth University School of Medicine – Dept. Human & Molecular Genetics

Teléfono: 804-828-9632 Correo electrónico: [email protected] Fax: 804-827-1124

https://rarediseases.org/es/organizations/virginia-commonwealth-university-school-of-medicine-dept-human-molecular-genetics/

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Vision of Children Foundation

Correo electrónico: [email protected] Fax: 858-314-7920

Enfermedades raras relacionadas: Ocular Albinism, Ocular Albinism with Late Onset Sensorineural Deafness

https://rarediseases.org/es/organizations/vision-of-children-foundation/

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