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Home / Patient Organizations / Patient Organizations
Kennedy’s Disease Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de Kennedy
https://rarediseases.org/es/organizations/kennedys-disease-association/
Ver perfil >
Kentucky Protection and Advocacy
Teléfono: 502-564-2967 Correo electrónico: [email protected] Fax: 502-564-0848
https://rarediseases.org/es/organizations/kentucky-protection-and-advocacy/
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Kharkov Renaissance Foundation For Children With Spinal Muscular Atrophy
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/kharkov-renaissance-foundation-for-children-with-spinal-muscular-atrophy/
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KickAS.org
Teléfono: 520-544-3023 Correo electrónico: [email protected] Fax: 520-544-3023
Enfermedades raras relacionadas: Fibromyalgia, Ankylosing Spondylitis, Reactive Arthritis ...
https://rarediseases.org/es/organizations/kickas-org/
Ver perfil >
Kidneeds
Correo electrónico: [email protected]
Enfermedades raras relacionadas: C3 Glomerulopathy
https://rarediseases.org/es/organizations/kidneeds/
Ver perfil >
Kidney & Urology Foundation of America, Inc.
Teléfono: 212-629-9770 Correo electrónico: [email protected] Fax: 212-629-5652
Enfermedades raras relacionadas: Nefropatía por IgA, Henoch-Schönlein Purpura, Goodpasture Syndrome, ...
https://rarediseases.org/es/organizations/kidney-urology-foundation-of-america-inc/
Ver perfil >
Kidney Cancer Association
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Leiomiomatosis hereditaria y carcinoma de células renales, Enfermedad de Von Hippel-Lindau, Carcinoma Medular Renal, ...
https://rarediseases.org/es/organizations/kidney-cancer-association/
Ver perfil >
Kidney Cancer Research Alliance
Enfermedades raras relacionadas: Carcinoma Medular Renal
https://rarediseases.org/es/organizations/kidney-cancer-research-alliance/
Ver perfil >
Kids Wish Network
https://rarediseases.org/es/organizations/kids-wish-network/
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Kids With Heart ~ National Association for Children’s Heart Disorders, Inc.
Teléfono: 920-498-0058 Correo electrónico: [email protected] Fax: 920-498-0058
Enfermedades raras relacionadas: Pediatric Cardiomyopathy, Cor Triatriatum, Pentalogy of Cantrell, ...
https://rarediseases.org/es/organizations/kids-with-heart-national-association-for-childrens-heart-disorders-inc/
Ver perfil >
KIDSCOPE
Teléfono: 404-892-1437 Correo electrónico: [email protected] Fax: 404-892-1437
https://rarediseases.org/es/organizations/kidscope/
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KIF1A.ORG
Miembro NORD
Teléfono: 929-630-5232 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Trastorno relacionado con KIF1A
https://rarediseases.org/es/organizations/kif1a-org/
Ver perfil >
Kindness For Kimberlee
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis
https://rarediseases.org/es/organizations/kindness-for-kimberlee/
Ver perfil >
Kleine-Levin Syndrome Foundation
Teléfono: 408-265-1099 Correo electrónico: [email protected] Fax: 408-269-2131
Enfermedades raras relacionadas: Kleine-Levin Syndrome
https://rarediseases.org/es/organizations/kleine-levin-syndrome-foundation/
Ver perfil >
Klinefelter Syndrome Association of Canada
Teléfono: 905-926-2942 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Klinefelter (47,XXY) y otras variantes
https://rarediseases.org/es/organizations/klinefelter-syndrome-association-of-canada/
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Klippel-Feil Syndrome Freedom
Enfermedades raras relacionadas: Síndrome de Klippel-Feil
https://rarediseases.org/es/organizations/klippel-feil-syndrome-freedom/
Ver perfil >
Klippel-Trenaunay Support Group
Teléfono: 513-722-7724 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Klippel-Trenaunay Syndrome
https://rarediseases.org/es/organizations/klippel-trenaunay-support-group/
Ver perfil >
KMT2C Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/kmt2c-foundation/
Ver perfil >
KMT2E Foundation O’Donnell-Luria-Rodan Syndrome
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/kmt2e-foundation-odonnell-luria-rodan-syndrome/
Ver perfil >
Koolen-De Vries Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Koolen-de Vries
https://rarediseases.org/es/organizations/koolen-de-vries-syndrome-foundation/
Ver perfil >
Krabbe Uk
https://rarediseases.org/es/organizations/krabbe-uk/
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Krabbeconnect
Miembro NORD
Teléfono: 800-800-5509 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Leucodistrofia, Enfermedad de Krabbe
https://rarediseases.org/es/organizations/krabbeconnect/
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Lactic Acidosis Support Trust
Fax: 160-683-7198
Enfermedades raras relacionadas: Congenital Lactic Acidosis, Deficiencia de Piruvato Carboxilasa, Síndrome de MELAS, ...
https://rarediseases.org/es/organizations/lactic-acidosis-support-trust/
Ver perfil >
Lakeshore Foundation
https://rarediseases.org/es/organizations/lakeshore-foundation/
Ver perfil >
LAL Solace, Inc.
Teléfono: 256-425-2638 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de Wolman
https://rarediseases.org/es/organizations/lal-solace-inc/
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LAL-D Aware
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de Wolman
https://rarediseases.org/es/organizations/lal-d-aware/
Ver perfil >
LAM Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Lymphangioleiomyomatosis, Neoplasia de células epitelioides perivasculares
https://rarediseases.org/es/organizations/lam-foundation/
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LAM Health Project
Teléfono: 617-460-7339 Correo electrónico: [email protected] Fax: 617-864-0614
Enfermedades raras relacionadas: Neoplasia de células epitelioides perivasculares, Esclerosis tuberosa
https://rarediseases.org/es/organizations/lam-health-project/
Ver perfil >
Larsen Syndrome Resource Center
Enfermedades raras relacionadas: Larsen Syndrome
https://rarediseases.org/es/organizations/larsen-syndrome-resource-center/
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LCHC
https://rarediseases.org/es/organizations/lchc/
Ver perfil >
Learning Ally
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Retinitis Pigmentaria
https://rarediseases.org/es/organizations/learning-ally/
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Learning Disabilities Association of America
Teléfono: 412-341-1515 Correo electrónico: [email protected] Fax: 412-344-0224
Enfermedades raras relacionadas: Trisomía X (síndrome del triple X o 47, XXX), Gerstmann Syndrome
https://rarediseases.org/es/organizations/learning-disabilities-association-of-america/
Ver perfil >
Learning Disabilities Association of Canada
Teléfono: 613-238-5721 Correo electrónico: [email protected] Fax: 613-235-5391
https://rarediseases.org/es/organizations/learning-disabilities-association-of-canada/
Ver perfil >
Legg Calve Perthes Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Legg Calvé Perthes Disease
https://rarediseases.org/es/organizations/legg-calve-perthes-foundation/
Ver perfil >
Leiomyosarcoma Support & Direct Research Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Leiomyosarcoma
https://rarediseases.org/es/organizations/leiomyosarcoma-support-direct-research-foundation/
Ver perfil >
Lennox-Gastaut Syndrome (LGS) Foundation
Teléfono: 718-374-3800 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Lennox-Gastaut, Status Epilepticus
https://rarediseases.org/es/organizations/lgs-foundation-inc/
Ver perfil >
Lennox-Gastaut Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/lennox-gastaut-syndrome-foundation/
Ver perfil >
Lennox-Gastaut Syndrome Foundation
Enfermedades raras relacionadas: Síndrome de Lennox-Gastaut
https://rarediseases.org/es/organizations/lennox-gastaut-syndrome-foundation-2/
Ver perfil >
Lenny’s Cure for CONDSIAS
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de ataxia neurodegenerativa-crisis-inducidas por estrés de inicio en la infancia
https://rarediseases.org/es/organizations/lennys-cure-for-condsias/
Ver perfil >
Les Turner Amyotrophic Lateral Sclerosis Foundation, Ltd.
Teléfono: 847-679-3311 Correo electrónico: [email protected] Fax: 847-679-9109
Enfermedades raras relacionadas: Primary Lateral Sclerosis, Esclerosis lateral amiotrófica
https://rarediseases.org/es/organizations/les-turner-amyotrophic-lateral-sclerosis-foundation-ltd/
Ver perfil >
Lesch-Nyhan Disease International Study Group
Teléfono: 847-234-3154 Fax: 847-234-3136
Enfermedades raras relacionadas: Lesch Nyhan Syndrome
https://rarediseases.org/es/organizations/lesch-nyhan-disease-international-study-group/
Ver perfil >
Let Them Hear Foundation
Teléfono: 650-462-3174 Correo electrónico: [email protected] Fax: 650-462-3144
Enfermedades raras relacionadas: Síndrome CHARGE, Síndrome de Treacher Collins, Síndrome de Wildervanck, ...
https://rarediseases.org/es/organizations/let-them-hear-foundation/
Ver perfil >
Let’s Cure ACC
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/lets-cure-acc/
Ver perfil >
Let’s Face It
Teléfono: 360-676-7325 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Treacher Collins, Síndrome de Trismo-Pseudocamptodactilia, Miller Syndrome, ...
https://rarediseases.org/es/organizations/lets-face-it/
Ver perfil >
Leukaemia CARE
Teléfono: 190-575-5977 Correo electrónico: [email protected] Fax: 190-575-5166
https://rarediseases.org/es/organizations/leukaemia-care/
Ver perfil >
Leukodystrophy Australia
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Leucodistrofia metacromática, Enfermedad de Pelizaeus-Merzbacher, Trastorno Relacionado con el Receptor del Factor Estimulante de Colonias 1, ...
https://rarediseases.org/es/organizations/leukodystrophy-australia/
Ver perfil >
Lewy Body Dementia Association, Inc.
Teléfono: 404-935-6444 Correo electrónico: [email protected] Fax: 480-422-5434
https://rarediseases.org/es/organizations/lewy-body-dementia-association-inc/
Ver perfil >
LGMD Awareness Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Limb-Girdle Muscular Dystrophies
https://rarediseases.org/es/organizations/lgmd-awareness-foundation/
Ver perfil >
LGMD-1D DNAJB6 Foundation and International Registry
Enfermedades raras relacionadas: Limb-Girdle Muscular Dystrophies
https://rarediseases.org/es/organizations/lgmd-1d-dnajb6-foundation-and-international-registry/
Ver perfil >
LGMD2I Research Fund
Teléfono: 425-460-2554 Correo electrónico: [email protected] Fax: 425-460-1236
Enfermedades raras relacionadas: Limb-Girdle Muscular Dystrophies
https://rarediseases.org/es/organizations/lgmd2i-research-fund/
Ver perfil >
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