Patient Organizations - Página 38 de 46 - National Organization for Rare Disorders

Retroperitoneal Fibrosis World Support

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Retroperitoneal Fibrosis

https://rarediseases.org/es/organizations/retroperitoneal-fibrosis-world-support/

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Rett Syndrome Research Trust

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: MECP2 Duplication Syndrome, Rett Syndrome

https://rarediseases.org/es/organizations/rett-syndrome-research-trust/

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Rheumatology Outpatient Clinic at Beth Israel Hospital

https://rarediseases.org/es/organizations/rheumatology-outpatient-clinic-at-beth-israel-hospital/

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RhizoKids International

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Condrodisplasia punctata rizomélica

https://rarediseases.org/es/organizations/rhizokids-international/

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Riaan Research Initiative Inc.

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/riaan-research-initiative-inc/

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Ring14 USA Outreach, Inc.

Teléfono: 765-491-6910 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/ring14-usa-outreach-inc/

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Ring20 Research and Support UK

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/ring20-research-and-support-uk/

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Riverwood Center

Teléfono: 269-925-0585 Correo electrónico: [email protected] Fax: 269-927-6063

https://rarediseases.org/es/organizations/riverwood-center/

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Robinow Syndrome Foundation

Teléfono: 763-434-1152 Correo electrónico: [email protected] Fax: 763-434-1152

Enfermedades raras relacionadas: Robinow Syndrome

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

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Rocky Mountain Disability & Business Technical Assistance Center

Teléfono: 303-866-6600 Fax: 303-830-0793

https://rarediseases.org/es/organizations/rocky-mountain-disability-business-technical-assistance-center/

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ROHHAD Fight Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome de obesidad infantil de rápida progresión-disfunción hipotalámica-hipoventilación-disregulación autonómica

https://rarediseases.org/es/organizations/rohhad-fight-inc/

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ROHHAD International Consortium

Enfermedades raras relacionadas: Síndrome de obesidad infantil de rápida progresión-disfunción hipotalámica-hipoventilación-disregulación autonómica

https://rarediseases.org/es/organizations/rohhad-international-consortium/

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Romberg’s Connection

Teléfono: 319-277-5030 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome de Parry-Romberg

https://rarediseases.org/es/organizations/rombergs-connection/

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Ronald McDonald House Charities

Teléfono: 630-623-7048 Correo electrónico: [email protected] Fax: 630-623-7488

https://rarediseases.org/es/organizations/ronald-mcdonald-house-charities/

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Rose Kushner ‘s Women’s Breast Cancer Advisory Center

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Paget’s Disease of the Breast

https://rarediseases.org/es/organizations/rose-kushner-s-womens-breast-cancer-advisory-center/

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Rothberg Institute For Childhood Diseases

Teléfono: 203-458-7100 Correo electrónico: [email protected] Fax: 203-458-2514

Enfermedades raras relacionadas: Esclerosis tuberosa

https://rarediseases.org/es/organizations/rothberg-institute-for-childhood-diseases/

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Rothmund-Thomson Syndrome (RTS) Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Síndrome de Rothmund-Thomson

https://rarediseases.org/es/organizations/rothmund-thomson-syndrome-rts-foundation/

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RP Fighting Blindness

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/rp-fighting-blindness/

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RTC Portland – Family Support and Children’s Mental Health & Training Center

Teléfono: 503-725-4040 Correo electrónico: [email protected] Fax: 503-725-4180

https://rarediseases.org/es/organizations/rtc-portland-family-support-and-childrens-mental-health-training-center/

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Rubinstein-Taybi Parent Group

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Rubinstein-Taybi Syndrome

https://rarediseases.org/es/organizations/rubinstein-taybi-parent-group/

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Rubinstein-Taybi Syndrome, UK Support Group

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Rubinstein-Taybi Syndrome

https://rarediseases.org/es/organizations/rubinstein-taybi-syndrome-uk-support-group/

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RUNX1 Research Program

Enfermedades raras relacionadas: Trastorno plaquetario familiar con neoplasia mieloide asociada

https://rarediseases.org/es/organizations/runx1-research-program/

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Rush University Medical Center

Teléfono: 312-942-5000 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/rush-university-medical-center/

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SADS UK (Sudden Arrhythmic Death Syndrome)

Teléfono: 127-781-1215 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Short QT Syndrome, Timothy Syndrome, Long QT Syndrome, ...

https://rarediseases.org/es/organizations/sads-uk-sudden-arrhythmic-death-syndrome/

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Sail To Prevail

Teléfono: 401-849-8898 Correo electrónico: [email protected] Fax: 401-849-8898

https://rarediseases.org/es/organizations/sail-to-prevail/

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Salla Treatment And Research

Enfermedades raras relacionadas: Lysosomal Free Sialic Acid Storage Disorders

https://rarediseases.org/es/organizations/salla-treatment-and-research/

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Sam Day Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/sam-day-foundation/

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SAMHSA’s Center for Substance Abuse Prevention

https://rarediseases.org/es/organizations/samhsas-center-for-substance-abuse-prevention/

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San Diego Brachial Plexus Network

Teléfono: 866-877-7004 Correo electrónico: [email protected] Fax: 844-221-2821

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

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San Diego Regional Center for the Developmental Disabilities

Teléfono: 858-576-2996 Correo electrónico: [email protected] Fax: 858-576-2873

https://rarediseases.org/es/organizations/san-diego-regional-center-for-the-developmental-disabilities/

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SANE Australia

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/sane-australia/

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Sanfilippo Children’s Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Mucopolisacaridosis tipo III

https://rarediseases.org/es/organizations/sanfilippo-childrens-foundation/

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Sanfilippo Foundation Switzerland

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Mucopolisacaridosis tipo III

https://rarediseases.org/es/organizations/sanfilippo-foundation-switzerland/

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Sarcoidosis & Lyme Disease Support Australia

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/sarcoidosis-lyme-disease-support-australia/

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Sarcoidosis Center

Teléfono: 901-761-5877 Correo electrónico: [email protected] Fax: 901-761-2280

https://rarediseases.org/es/organizations/sarcoidosis-center/

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Sarcoidosis Online Sites (S.O.S.)

Teléfono: 239-945-2414 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/sarcoidosis-online-sites-s-o-s/

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Sarcoma Alliance

Teléfono: 415-381-7236 Correo electrónico: [email protected] Fax: 415-381-7235

Enfermedades raras relacionadas: Leiomyosarcoma, Mesenchymal Chondrosarcoma, Uterine Leiomyosarcoma, ...

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

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Sarcoma Alliance for Research through Collaboration

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/sarcoma-alliance-for-research-through-collaboration/

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Sarcoma Foundation of America

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Leiomyosarcoma, Mesenchymal Chondrosarcoma, Uterine Leiomyosarcoma, ...

https://rarediseases.org/es/organizations/sarcoma-foundation-of-america/

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SATB2 Gene Foundation

Miembro NORD

Teléfono: 678-832-9133 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/satb2-gene-foundation/

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Save Babies Through Screening Foundation

Teléfono: 610-251-9876 Correo electrónico: [email protected] Fax: 610-647-5757

Enfermedades raras relacionadas: Short Chain Acyl CoA Dehydrogenase Deficiency, Homocystinuria due to Cystathionine Beta-Synthase Deficiency, Tyrosinemia Type 1, ...

https://rarediseases.org/es/organizations/save-babies-through-screening-foundation/

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SBS Cure Project

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Short Bowel Syndrome

https://rarediseases.org/es/organizations/sbs-cure-project/

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SCA27b Ataxia Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/sca27b-ataxia-foundation/

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Scarring Alopecia Foundation (SAF)

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Cicatricial Alopecia

https://rarediseases.org/es/organizations/scarring-alopecia-foundation-saf/

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Schepens Eye Research Institute

Teléfono: 617-912-0100 Correo electrónico: [email protected] Fax: 617-912-0101

Enfermedades raras relacionadas: Chandler’s Syndrome, Síndrome de Duane, Eales Disease, ...

https://rarediseases.org/es/organizations/schepens-eye-research-institute/

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Schinzel-Giedion Syndrome Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Schinzel Giedion Syndrome

https://rarediseases.org/es/organizations/schinzel-giedion-syndrome-foundation/

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Schiz Kidz Buddies – Schizencephaly Support Group

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/schiz-kidz-buddies-schizencephaly-support-group/

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Schizophrenia Society of Canada

Teléfono: 204-786-1616 Correo electrónico: [email protected] Fax: 204-783-4898

https://rarediseases.org/es/organizations/schizophrenia-society-of-canada/

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Scleroderma and Raynaud’s UK

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Systemic Scleroderma, Scleroderma

https://rarediseases.org/es/organizations/scleroderma-and-raynauds-uk/

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Scleroderma Research Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/scleroderma-research-foundation/

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