Patient Organizations - National Organization for Rare Disorders

«22q and You» Center

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Chromosome 22q11.2 Deletion Syndrome, Síndrome de deleción del cromosoma 22q11.2

https://rarediseases.org/es/organizations/22q-and-you-center/

11q Research and Resource Group

Teléfono: 404-428-8440 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Succinic Semialdehyde Dehydrogenase Deficiency, Chromosome 11, Partial Monosomy 11q, Síndrome de Jacobsen (monosomía parcial 11q) ...

https://rarediseases.org/es/organizations/11q-research-and-resource-group/

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17q12 Foundation

Miembro NORD

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/17q12-foundation/

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1p36 Deletion Support & Awareness

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/1p36-deletion-support-awareness/

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22q Alabama

Teléfono: 205-431-5737 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Chromosome 22q11.2 Deletion Syndrome

https://rarediseases.org/es/organizations/22q-alabama/

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22q Family Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/22q-family-foundation/

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3q29 Foundation

Miembro NORD

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/3q29-foundation/

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4P- Support Group, Inc.

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Wolf-Hirschhorn Syndrome

https://rarediseases.org/es/organizations/4p-support-group-inc/

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5P-Society

Teléfono: 562-804-4506 Correo electrónico: [email protected] Fax: 562-920-5240

Enfermedades raras relacionadas: Cri du Chat Syndrome

https://rarediseases.org/es/organizations/5p-society/

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A Breath of Hope Foundation For NMO

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/a-breath-of-hope-foundation-for-nmo/

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A Cure in Sight

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Ocular Melanoma

https://rarediseases.org/es/organizations/a-cure-in-sight/

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A family who battled with ALD and AMN

https://rarediseases.org/es/organizations/a-family-who-battled-with-ald-and-amn/

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A Foundation Building Strength for Nemaline Myopathy

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Congenital Myopathy, Nemaline Myopathy

https://rarediseases.org/es/organizations/afoundation-building-strength-for-nemaline-myopathy/

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A Twist of Fate-ATS

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Arterial Tortuosity Syndrome, Síndrome de tortuosidad arterial

https://rarediseases.org/es/organizations/a-twist-of-fate-ats/

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A-T Children’s Project

Teléfono: 954-481-6611

https://rarediseases.org/es/organizations/a-t-childrens-project/

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A. J. Pappanikou Center for Excellence in Developmental Disabilities

Teléfono: 860-679-1500 Correo electrónico: [email protected] Fax: 860-679-1571

https://rarediseases.org/es/organizations/a-j-pappanikou-center-for-excellence-in-developmental-disabilities/

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AADC Family Network

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Aromatic L-Amino Acid Decarboxylase Deficiency, Deficiencia de L-aminoácido aromático decarboxilasa

https://rarediseases.org/es/organizations/aadc-family-network/

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Aarda

https://rarediseases.org/es/organizations/aarda/

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Aarskog Syndrome Parents Support Group

Teléfono: 215-943-7131 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Aarskog Syndrome, Síndrome de Aarskog

https://rarediseases.org/es/organizations/aarskog-syndrome-parents-support-group/

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Abdominal Cancers Alliance, a program of Partners for Cancer Care and Prevention

Miembro NORD

Teléfono: 410-216-4449 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/abdominal-cancers-alliance-a-program-of-partners-for-cancer-care-and-prevention/

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Abetalipoproteinemia and Related Disorders Foundation

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Abetalipoproteinemia, chylomicron retention disease, familial hypobetalipoproteinemia 1, ...

https://rarediseases.org/es/organizations/abetalipoproteinemia-and-related-disorders-foundation/

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About Madelungs

Teléfono: 925-516-6744 Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/about-madelungs/

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AboutFace International

Teléfono: 416-597-2229 Correo electrónico: [email protected] Fax: 416-597-8494

Enfermedades raras relacionadas: Oral-Facial-Digital Syndrome, Trismus-Pseudocamptodactyly Syndrome, Branchio Oculo Facial Syndrome, ...

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

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Academy of Nutrition and Dietetics

Teléfono: 312-899-0400 Correo electrónico: [email protected] Fax: 312-899-4899

Enfermedades raras relacionadas: Refractory Celiac Disease

https://rarediseases.org/es/organizations/academy-of-nutrition-and-dietetics/

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Academy of Spinal Cord Injury Professionals, Inc.

Teléfono: 217-753-1190 Correo electrónico: [email protected] Fax: 217-525-1271

Enfermedades raras relacionadas: Transverse Myelitis

https://rarediseases.org/es/organizations/academy-of-spinal-cord-injury-professionals-inc/

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Accord Alliance

Correo electrónico: [email protected]

Enfermedades raras relacionadas: WNT4 Deficiency, Swyer syndrome, Mayer-Rokitansky-Küster-Hauser Syndrome, ...

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

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ACD

https://rarediseases.org/es/organizations/acd/

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Achalasia Awareness Organization

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Achalasia

https://rarediseases.org/es/organizations/achalasia-awareness-organization/

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ACHC

https://rarediseases.org/es/organizations/achc/

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Achromatopsia Network

Teléfono: 510-540-4700 Correo electrónico: [email protected] Fax: 510-540-4767

Enfermedades raras relacionadas: Achromatopsia

https://rarediseases.org/es/organizations/achromatopsia-network/

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Acid Maltase Deficiency Association

Miembro NORD

Teléfono: 210-473-0108 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Pompe Disease, Enfermedad de Pompe

https://rarediseases.org/es/organizations/acid-maltase-deficiency-association/

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Acoustic Neuroma Association

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Acoustic Neuroma

https://rarediseases.org/es/organizations/acoustic-neuroma-association/

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Acoustic Neuroma Association of Canada

Correo electrónico: [email protected]

Enfermedades raras relacionadas: NF2-Related Schwannomatosis, Acoustic Neuroma, Schwannomatosis relacionada con NF2 ...

https://rarediseases.org/es/organizations/acoustic-neuroma-association-of-canada/

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Acromegaly Community, Inc.

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Acromegaly, Acromegalia

https://rarediseases.org/es/organizations/acromegaly-community-inc/

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Acvocates For Pulmonary Arterrial Hypertension

https://rarediseases.org/es/organizations/acvocates-for-pulmonary-arterrial-hypertension/

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ADCY5.org

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: ADCY5-Related Dyskinesia

https://rarediseases.org/es/organizations/adcy5-org/

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Addison’s Disease Self-Help Group (UK)

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Addison’s Disease

https://rarediseases.org/es/organizations/addisons-disease-self-help-group-uk/

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Adenoid Cystic Carcinoma Organization International

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Adenoid Cystic Carcinoma, Carcinoma quístico adenoide

https://rarediseases.org/es/organizations/adenoid-cystic-carcinoma-organization-international/

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Adenoid Cystic Carcinoma Research Foundation

Teléfono: 781-248-9699 Correo electrónico: [email protected]

Enfermedades raras relacionadas: Adenoid Cystic Carcinoma, Carcinoma quístico adenoide

https://rarediseases.org/es/organizations/adenoid-cystic-carcinoma-research-foundation/

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ADNP-Kids Research Foundation

Correo electrónico: [email protected]

Enfermedades raras relacionadas: ADNP Syndrome

https://rarediseases.org/es/organizations/adnp-kids-research-foundation/

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Adrenal Alternatives Foundation

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/adrenal-alternatives-foundation/

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Adrenal Insufficiency United

Miembro NORD

Correo electrónico: [email protected]

Enfermedades raras relacionadas: X-Linked Adrenoleukodystrophy, Addison’s Disease

https://rarediseases.org/es/organizations/adrenal-insufficiency-united/

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Adult Congenital Heart Association

Teléfono: 215-849-1260 Correo electrónico: [email protected] Fax: 215-849-1261

Enfermedades raras relacionadas: Dextrocardia with Situs Inversus, Tetralogy of Fallot, Ventricular Septal Defects ...

https://rarediseases.org/es/organizations/adult-congenital-heart-association/

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Adult Medical Genetics Program, University of Colorado

Teléfono: 303-724-1400 Fax: 303-724-0020

https://rarediseases.org/es/organizations/adult-medical-genetics-program-university-of-colorado/

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Advancement of Research for Myopathies (ARM)

Teléfono: 818-789-1044 Correo electrónico: [email protected] Fax: 818-337-7250

Enfermedades raras relacionadas: GNE Myopathy

https://rarediseases.org/es/organizations/advancement-of-research-for-myopathies-arm/

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Advocacy & Awareness for Immune Disorders Association

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/advocacy-awareness-for-immune-disorders-association/

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Advocacy Center (Louisiana)

Teléfono: 504-522-2337 Correo electrónico: [email protected] Fax: 504-522-5507

https://rarediseases.org/es/organizations/advocacy-center-louisiana/

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Advocacy for Neuroacanthocytosis Patients

Correo electrónico: [email protected]

https://rarediseases.org/es/organizations/advocacy-for-neuroacanthocytosis-patients-2/

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Advocacy for Neuroacanthocytosis Patients

Correo electrónico: [email protected]

Enfermedades raras relacionadas: Neuroacanthocytosis, Pantothenate Kinase-Associated Neurodegeneration

https://rarediseases.org/es/organizations/advocacy-for-neuroacanthocytosis-patients/

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AED Pregnancy Registry – Massachusetts General Hospital

Teléfono: 617-724-9550 Correo electrónico: [email protected] Fax: 617-724-8307

Enfermedades raras relacionadas: Status Epilepticus

https://rarediseases.org/es/organizations/aed-pregnancy-registry-massachusetts-general-hospital/

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