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Home / Patient Organizations / Patient Organizations
United Brachial Plexus Network
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Thoracic Outlet Syndrome
https://rarediseases.org/es/organizations/united-brachial-plexus-network/
Ver perfil >
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: Leucodistrofia metacromática, Deficiencia de folato cerebral, Enfermedad de Pelizaeus-Merzbacher, ...
https://rarediseases.org/es/organizations/united-leukodystrophy-foundation/
Ver perfil >
United Mitochondrial Disease Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Pyruvate Dehydrogenase Complex Deficiency, Deficiencia de Piruvato Carboxilasa, Síndromes de deficiencia de creatina cerebral, ...
https://rarediseases.org/es/organizations/united-mitochondrial-disease-foundation/
Ver perfil >
United MSD Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Multiple Sulfatase Deficiency
https://rarediseases.org/es/organizations/united-msd-foundation/
Ver perfil >
United Pompe Foundation
Teléfono: 559-227-1898 Correo electrónico: [email protected] Fax: 559-227-1898
Enfermedades raras relacionadas: Enfermedad de Pompe
https://rarediseases.org/es/organizations/united-pompe-foundation/
Ver perfil >
United Porphyrias Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Acute Intermittent Porphyria, Porfiria Variegata, Porfiria ALAD, ...
https://rarediseases.org/es/organizations/united-porphyrias-association/
Ver perfil >
United Self-Help (Hawaii)
Correo electrónico: [email protected] Fax: 808-931-6448
https://rarediseases.org/es/organizations/united-self-help-hawaii/
Ver perfil >
United Spinal Association
Teléfono: 718-803-3782 Correo electrónico: [email protected] Fax: 718-803-0414
https://rarediseases.org/es/organizations/united-spinal-association/
Ver perfil >
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/
Ver perfil >
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/
Ver perfil >
United States Bone and Joint Decade
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/united-states-bone-and-joint-decade/
Ver perfil >
United States Department of Health and Human Services
https://rarediseases.org/es/organizations/united-states-department-of-health-and-human-services/
Ver perfil >
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/
Ver perfil >
United Survivors with Epidermolysis Bullosa
Teléfono: 801-319-0160 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/united-survivors-with-epidermolysis-bullosa/
Ver perfil >
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/
Ver perfil >
University of Southern California Medical Center
Fax: 323-442-8672
https://rarediseases.org/es/organizations/university-of-southern-california-medical-center/
Ver perfil >
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/
Ver perfil >
University of Toronto
Teléfono: 416-946-2973 Correo electrónico: [email protected] Fax: 416-946-2050
https://rarediseases.org/es/organizations/university-of-toronto/
Ver perfil >
Uplifting Athletes
Miembro NORD
Teléfono: 717-737-7900 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/uplifting-athletes/
Ver perfil >
Urea Cycle Disorders Consortium
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de N-Acetilglutamato Sintetasa, Hiperornitinemia-Hiperamonemia-Homocitrulinuria (Síndrome HHH), Citrullinemia Type 1, ...
https://rarediseases.org/es/organizations/urea-cycle-disorders-consortium/
Ver perfil >
Urology Care Foundation
Teléfono: 410-689-3700 Correo electrónico: [email protected] Fax: 410-689-3896
Enfermedades raras relacionadas: Nefropatía por IgA, Cáncer testicular, Renal Cell Carcinoma, ...
https://rarediseases.org/es/organizations/urology-care-foundation/
Ver perfil >
US Hereditary Angioedema Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Angioedema hereditario
https://rarediseases.org/es/organizations/us-hereditary-angioedema-association/
Ver perfil >
US MEF2C Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de MEF2C
https://rarediseases.org/es/organizations/us-mef2c-foundation/
Ver perfil >
Us Pain Foundation Ambassador, Rhode Islan
https://rarediseases.org/es/organizations/us-pain-foundation-ambassador-rhode-islan/
Ver perfil >
Usher III Initiative, Inc
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Usher
https://rarediseases.org/es/organizations/usher-iii-initiative-inc/
Ver perfil >
Usher Syndrome Coalition
Miembro NORD
Teléfono: 800-946-9203 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Usher
https://rarediseases.org/es/organizations/usher-syndrome-coalition/
Ver perfil >
V.I.N.E.S.
https://rarediseases.org/es/organizations/v-i-n-e-s/
Ver perfil >
Vaincre Les Maladies Lysosomales
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Mucopolysaccharidosis Type I, Enfermedad de Gaucher, Enfermedad de Niemann-Pick Tipo C, ...
https://rarediseases.org/es/organizations/vaincre-les-maladies-lysosomales/
Ver perfil >
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/
Ver perfil >
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/
Ver perfil >
Vascular Birthmarks Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Sturge-Weber, PHACE Syndrome, Cutis Marmorata Telangiectatica Congenita, ...
https://rarediseases.org/es/organizations/vascular-birthmarks-foundation/
Ver perfil >
Vascular Cures
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Fibromuscular Dysplasia, Buerger’s Disease, Vasculitis, ...
https://rarediseases.org/es/organizations/vascular-cures/
Ver perfil >
Vasculitis Foundation
Miembro NORD
Teléfono: 816-436-8211 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Perniosis, Granulomatosis Eosinofílica con Poliangeítis, Arteritis de Células Gigantes, ...
https://rarediseases.org/es/organizations/vasculitis-foundation/
Ver perfil >
Vereniging voor Kinder met Stofwisselingsziekten
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de MELAS
https://rarediseases.org/es/organizations/vereniging-voor-kinder-met-stofwisselingsziekten/
Ver perfil >
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/
Ver perfil >
Vermont Legal Aid
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/vermont-legal-aid/
Ver perfil >
Vestibular Disorders Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Neurinoma acústico, Benign Paroxysmal Positional Vertigo, Tinnitus, ...
https://rarediseases.org/es/organizations/vestibular-disorders-association/
Ver perfil >
VEXAS Global Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/vexas-global-foundation/
Ver perfil >
VHL Alliance
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de Von Hippel-Lindau
https://rarediseases.org/es/organizations/vhl-alliance/
Ver perfil >
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/
Ver perfil >
Vision of Children Foundation
Correo electrónico: [email protected] Fax: 858-314-7920
Enfermedades raras relacionadas: Ocular Albinism, Albinismo ocular con sordera neurosensorial tardía
https://rarediseases.org/es/organizations/vision-of-children-foundation/
Ver perfil >
VISIONS Services for the Blind and Visually Impaired
Teléfono: 212-625-1616 Correo electrónico: [email protected] Fax: 212-219-4078
Enfermedades raras relacionadas: Síndrome de Cohen
https://rarediseases.org/es/organizations/visions-services-for-the-blind-and-visually-impaired/
Ver perfil >
Vitiligo Support International
Teléfono: 434-326-5380 Correo electrónico: [email protected] Fax: 540-301-1551
https://rarediseases.org/es/organizations/vitiligo-support-international/
Ver perfil >
Volunteer Center, Inc.
Teléfono: 315-474-7011 Fax: 315-479-6774
https://rarediseases.org/es/organizations/volunteer-center-inc/
Ver perfil >
VOR
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/vor/
Ver perfil >
Vulvar Pain Foundation
https://rarediseases.org/es/organizations/vulvar-pain-foundation/
Ver perfil >
Wake Up Narcolepsy, Inc.
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Narcolepsy
https://rarediseases.org/es/organizations/wake-up-narcolepsy-inc/
Ver perfil >
WARD’S Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/wards-foundation/
Ver perfil >
Warm Autoimmune Hemolytic Anemia Warriors
Miembro NORD
Teléfono: 740-360-5505 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Anemia autoinmune hemolítica tipo caliente, Cold Agglutinin Disease, Anemia, Hemolytic, Acquired Autoimmune ...
https://rarediseases.org/es/organizations/warm-autoimmune-hemolytic-anemia-warriors/
Ver perfil >
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