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Home / Patient Organizations / Patient Organizations
International Institute of Reconstructive Microsurgery
Teléfono: 757-625-6347 Correo electrónico: [email protected] Fax: 757-625-2131
https://rarediseases.org/es/organizations/international-institute-of-reconstructive-microsurgery/
Ver perfil >
International Joseph Disease Foundation, Inc.
Teléfono: 530-246-4722 Correo electrónico: [email protected] Fax: 530-232-2773
Enfermedades raras relacionadas: Enfermedad de Machado-Joseph
https://rarediseases.org/es/organizations/international-joseph-disease-foundation-inc/
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International League Against Epilepsy
Teléfono: 860-586-7547 Correo electrónico: [email protected] Fax: 860-586-7550
Enfermedades raras relacionadas: Hypothalamic Hamartoma, Dravet Syndrome, Síndrome de deficiencia del transportador de glucosa tipo 1 ...
https://rarediseases.org/es/organizations/international-league-against-epilepsy/
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International Lesch-Nyhan Disease Association
Teléfono: 215-677-4206
Enfermedades raras relacionadas: Lesch Nyhan Syndrome
https://rarediseases.org/es/organizations/international-lesch-nyhan-disease-association/
Ver perfil >
International Long QT Syndrome Registry
Teléfono: 585-276-0016 Correo electrónico: [email protected] Fax: 585-273-5283
Enfermedades raras relacionadas: Síndrome de Andersen-Tawil, Jervell and Lange-Nielsen Syndrome, Isolated congenital Long QT Syndrome ...
https://rarediseases.org/es/organizations/international-long-qt-syndrome-registry/
Ver perfil >
International Mosaic Down Syndrome Association
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-mosaic-down-syndrome-association/
Ver perfil >
International Myeloma Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Multiple Myeloma
https://rarediseases.org/es/organizations/international-myeloma-foundation/
Ver perfil >
International Neuroendocrine Cancer Alliance
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Neoplasias Neuroendocrinas Pancreáticas (pNENs), Carcinoid Syndrome
https://rarediseases.org/es/organizations/international-neuroendocrine-cancer-alliance/
Ver perfil >
International OCD Foundation
Teléfono: 617-973-5801 Correo electrónico: [email protected] Fax: 617-973-5803
Enfermedades raras relacionadas: Trichotillomania
https://rarediseases.org/es/organizations/international-ocd-foundation/
Ver perfil >
International Oral Lichen Planus Support Group
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Lichen Planus
https://rarediseases.org/es/organizations/international-oral-lichen-planus-support-group/
Ver perfil >
International Ostomy Association
https://rarediseases.org/es/organizations/international-ostomy-association/
Ver perfil >
International Pain Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-pain-foundation/
Ver perfil >
International Painful Bladder Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Sjögren Syndrome
https://rarediseases.org/es/organizations/international-painful-bladder-foundation/
Ver perfil >
International Palindromic Rheumatism Society
Teléfono: 174-379-0115 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-palindromic-rheumatism-society/
Ver perfil >
International Paruresis Association
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-paruresis-association/
Ver perfil >
International Patient Organization for Primary Immunodeficiencies
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Complete DiGeorge Syndrome, Atimia congénita, Leukocyte Adhesion Deficiency Syndromes, ...
https://rarediseases.org/es/organizations/international-patient-organization-for-primary-immunodeficiencies/
Ver perfil >
International Pemphigus & Pemphigoid Foundation (IPPF)
Miembro NORD
Teléfono: 916-922-1298 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Bullous Pemphigoid, Autoimmune Blistering Diseases, Mucous Membrane Pemphigoid, ...
https://rarediseases.org/es/organizations/international-pemphigus-pemphigoid-foundation-ippf/
Ver perfil >
International Pleuropulmonary Blastoma Registry
Teléfono: 612-813-7115 Correo electrónico: [email protected] Fax: 612-813-7108
Enfermedades raras relacionadas: Blastoma pleuropulmonar
https://rarediseases.org/es/organizations/international-pleuropulmonary-blastoma-registry/
Ver perfil >
International Prader Willi Syndrome Organization
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Prader-Willi
https://rarediseases.org/es/organizations/international-prader-willi-syndrome-organization/
Ver perfil >
International Prader-Willi Syndrome Organisation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Prader-Willi
https://rarediseases.org/es/organizations/international-prader-willi-syndrome-organisation-2/
Ver perfil >
International Psychogeriatric Association
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-psychogeriatric-association/
Ver perfil >
International Registry of Werner Syndrome
Teléfono: 206-543-5088 Correo electrónico: [email protected] Fax: 206-685-8356
Enfermedades raras relacionadas: Síndrome de Werner
https://rarediseases.org/es/organizations/international-registry-of-werner-syndrome/
Ver perfil >
International Rett Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: MECP2 Duplication Syndrome, CDKL5 Deficiency Disorder, Rett Syndrome ...
https://rarediseases.org/es/organizations/international-rett-syndrome-foundation/
Ver perfil >
International Sacral Agenesis/Caudal Regression Association (iSACRA)
Miembro NORD
Teléfono: 703-568-7989 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de la regresión caudal
https://rarediseases.org/es/organizations/international-sacral-agenesis-caudal-regression-association-isacra/
Ver perfil >
International Society for Cutaneous Lymphomas
Enfermedades raras relacionadas: Mycosis Fungoides, Cutaneous T-Cell Lymphomas
https://rarediseases.org/es/organizations/international-society-for-cutaneous-lymphomas/
Ver perfil >
International Society for Mannosidosis & Related Diseases (ISMRD)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Fucosidosis, Beta-manosidosis, Schindler disease, ...
https://rarediseases.org/es/organizations/international-society-for-mannosidosis-related-diseases-ismrd/
Ver perfil >
International Society for Minimally Invasive Cardiac Surgery
Teléfono: 978-927-8330 Correo electrónico: [email protected] Fax: 978-524-8890
https://rarediseases.org/es/organizations/international-society-for-minimally-invasive-cardiac-surgery/
Ver perfil >
International Society for Systemic Auto-Inflammatory Diseases
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Mevalonate Kinase Deficiency
https://rarediseases.org/es/organizations/international-society-for-systemic-auto-inflammatory-diseases/
Ver perfil >
International Society of Nurses in Genetics (ISONG)
Teléfono: 412-344-1414 Correo electrónico: [email protected] Fax: 412-344-0599
https://rarediseases.org/es/organizations/international-society-of-nurses-in-genetics-isong/
Ver perfil >
International Standards for Cytogenomic Arrays Consortium
Teléfono: 404-778-8485 Correo electrónico: [email protected] Fax: 404-778-8562
https://rarediseases.org/es/organizations/international-standards-for-cytogenomic-arrays-consortium/
Ver perfil >
International Stills Disease Foundation, Inc.
Correo electrónico: [email protected] Fax: 850-871-6656
https://rarediseases.org/es/organizations/international-stills-disease-foundation-inc/
Ver perfil >
International Topical Steroid Awareness Network
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-topical-steroid-awareness-network/
Ver perfil >
International Topical Steroid Withdrawal Organization
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/international-topical-steroid-withdrawal-organization/
Ver perfil >
International Ventilator Users Network
Teléfono: 314-534-0475 Correo electrónico: [email protected] Fax: 314-534-5070
https://rarediseases.org/es/organizations/international-ventilator-users-network/
Ver perfil >
International WAGR Syndrome Association (IWSA)
Miembro NORD
Teléfono: 301-370-8878 Correo electrónico: [email protected]
Enfermedades raras relacionadas: WAGR Syndrome/11p Deletion Syndrome, Tumor de Wilms
https://rarediseases.org/es/organizations/international-wagr-syndrome-association-iwsa/
Ver perfil >
International Waldenstrom’s Macroglobulinemia Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Macroglobulinemia de Waldenström
https://rarediseases.org/es/organizations/international-waldenstroms-macroglobulinemia-foundation/
Ver perfil >
International Warburg Micro Syndrome Society
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Microsíndrome de Warburg
https://rarediseases.org/es/organizations/international-warburg-micro-syndrome-society/
Ver perfil >
Interstitial Cystitis Association
Correo electrónico: [email protected] Fax: 703-506-3266
https://rarediseases.org/es/organizations/interstitial-cystitis-association/
Ver perfil >
Intestinal Malrotation Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/intestinal-malrotation-foundation/
Ver perfil >
Intestinal Multiple Polyposis and Colorectal Cancer Registry
Teléfono: 570-788-3712 Correo electrónico: [email protected] Fax: 717-788-4046
https://rarediseases.org/es/organizations/intestinal-multiple-polyposis-and-colorectal-cancer-registry/
Ver perfil >
Intestinal Rehab & Transplant Unwrapped
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/transplant-unwrapped/
Ver perfil >
Intracranial Hypertension Research Foundation
Teléfono: 360-693-4473 Correo electrónico: [email protected] Fax: 360-694-7062
Enfermedades raras relacionadas: Idiopathic Intracranial Hypertension
https://rarediseases.org/es/organizations/intracranial-hypertension-research-foundation/
Ver perfil >
Intractable Childhood Epilepsy Alliance
Enfermedades raras relacionadas: Dravet Syndrome
https://rarediseases.org/es/organizations/intractable-childhood-epilepsy-alliance/
Ver perfil >
Invisible Illness Awareness Network Nfp
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/invisible-illness-awareness-network-nfp/
Ver perfil >
Iowa Division of Persons with Disabilities
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/iowa-division-of-persons-with-disabilities/
Ver perfil >
Iowa Regional Genetic Consultation Service
Teléfono: 515-281-7689 Correo electrónico: [email protected] Fax: 319-356-3347
https://rarediseases.org/es/organizations/iowa-regional-genetic-consultation-service/
Ver perfil >
IRF2BPL Foundation
https://rarediseases.org/es/organizations/irf2bpl-foundation/
Ver perfil >
Irish Chronic Pain Association
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Central Pain Syndrome, Fibromyalgia
https://rarediseases.org/es/organizations/irish-chronic-pain-association/
Ver perfil >
Irish Haemophilia Society
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Hemofilia B adquirida, Factor VII Deficiency, Acquired Hemophilia A, ...
https://rarediseases.org/es/organizations/irish-haemophilia-society/
Ver perfil >
Irish Heart Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Pediatric Cardiomyopathy
https://rarediseases.org/es/organizations/irish-heart-foundation/
Ver perfil >
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