• Patients & Caregivers
  • Patient Organizations
  • For Clinicians & Researchers
  • NORD En español
  • Contact Us
NORD logo with tag for website.
  • Donate
  • Rare Disease News
  • Find a Rare Disease
  • About Us
  • Events
  • Understanding Rare Disease
        • Where to start
          • Rare Disease Facts and Statistics
          • NORD’s Rare Disease Database
          • Rare Disease Video Library
          • Help for People with Undiagnosed Medical Conditions
          • Find A Rare Disease Organization
          • Diagnóstico Raro en Niños: Una Guía para los Padres para Encontrar el Diagnóstico de una Enfermedad Rara
          • A PCP Primer to Diagnosing Rare Disease in Children
        • Stay informed
          • Stories That Inspire
          • RareEdu® – Online Learning Platform
          • Rare Disease Day®
          • Resource Library
          • State Resource Center
          • Publications On Rare Disease
        • Featured NORD Event
          • LRLS Thumbnail for rarediseases.orgNORD® Living Rare, Living Stronger® Patient & Family Meeting
          • Learn More
  • Living with a Rare Disease
        • Manage your care
          • Getting Help & Support
          • Managing Your Disease
          • Telemedicina – Para Pacientes y Cuidadores
        • We can help
          • How NORD Can Help
          • Speak To Someone at NORD
          • Rare Disease Centers Of Excellence
          • Patient Assistance Programs
          • Explore Clinical Trials
          • Find A Patient Organization
          • Caregiver Resources
        • Discover Local Resources
        • State-Resource-Cente
  • Community Support
      • Where to start
        • Rare Diseases Defined
        • Financial & Medical Assistance
        • Call Center & Information Services
        • Bringing Together Your Community
      • Mentoring organizations
        • NORD Member List
        • Start a Rare Disease Organization
        • Membership Program
        • Becoming Research Ready
        • Patient-Focused Drug Development
      • Improving clinical care
        • NORD Claim Your Care®
        • Rare Disease Centers of Excellence
        • Continuing Medical Education (CME)
      • Partnering with the community
        • Corporate Council
        • National Partnerships
        • Global Partnerships
        • Rare Cancer Coalition
        • NORD Rare Impact Awards®
      • Featured NORD Event
        • LRLS Thumbnail for rarediseases.orgNORD® Living Rare, Living Stronger® Patient & Family Meeting
        • Learn More
  • Advancing Research
      • For patients
        • List of Rare Diseases
        • Gene Therapy for Rare Disease
        • Find Clinical Trials & Research Studies
      • For researchers
        • Request for Proposals
        • Research Grant Programs
        • Data Standards for Rare Diseases
        • Patient-Focused Drug Development Meetings
      • For clinicians
        • Resources for Patients
        • Find a Rare Disease Care Center
        • Continuing Medical Education (CME)
      • Connect
        • IAMRARE® Program Powered by NORD
        • Rare Disease Cures Accelerator (RDCA-DAP)
        • All of Us Study
      • Featured NORD Event
        • Symposium thumbnailNORD Rare Disease Scientific Symposium
        • Learn More
  • Driving Policy
        • NORD policy and you
          • Public Policy Positions
          • Policy Statements & Letters to Policymakers
          • Rare Disease Advisory Councils
          • NORD State Report Card®
        • Taking action
          • Join the Rare Action Network®
          • Take Action
          • Advocate for Rare Disease Policies as a Health Care Professional
        • Join A Current Campaign.
          • NORD policy alert notification icon imageLearn about our current
            policy goals
          • Take Action
        • Featured NORD Event
        • Summit thumbnailNORD® Rare Diseases & Orphan Products Breakthrough Summit®
        • Learn More
  • Get Involved
      • Raising Awareness & Funds with NORD
        • Do-It-Yourself NORD Fundraiser
        • NORD Students for Rare®
        • Sports & Fitness Fundraisers
        • Media Inquiries
      • In your community
        • Attend An Upcoming Event
        • Find a Rare Disease Patient Organization
        • Stay Informed With NORD’s Email Newsletter
        • Rare Disease Day®
      • Patient stories
        • Share Your Story
        • Careers At NORD
        • Intern At NORD
        • Jobs At Patient Disease Organizations
      • Corporate Council
        • Corporate Council
        • Corporate Council Members
        • Join Corporate Council
        • Corporate Council – Code of Conduct
      • Show Your Support
        • Donate to NORD
        • Volunteer Application
        • Store
  • Donate
  • Understanding Rare Disease
    • Where to start
      • Rare Disease Facts and Statistics
      • NORD’s Rare Disease Database
      • Rare Disease Video Library
      • What It Means To Be Undiagnosed
      • Find A Rare Disease Organization
      • Diagnóstico Raro en Niños: Una Guía para los Padres para Encontrar el Diagnóstico de una Enfermedad Rara
      • A PCP Primer to Diagnosing Rare Disease in Children
    • Stay informed
      • Stories That Inspire
      • RareEdu® – Online Learning Platform
      • Rare Disease Day
      • Resource Library
      • State Resource Center – Find Local Resources
      • Publications On Rare Disease
    • NORD® Living Rare, Living Stronger® Patient & Family Meeting
      • Learn More
  • Living with a Rare Disease
    • Manage your care
      • Getting Help & Support
      • Managing Your Disease
    • We can help
      • How NORD Can Help
      • Speak To Someone at NORD
      • Rare Disease Center Of Excellence
      • Patient Assistance Programs
      • Explore Clinical Trials
      • Find A Patient Organization
      • Caregiver Resources
      • State Resource Center – Discover Local Resources
  • Community Support
    • Where to start
      • Rare Diseases Defined
      • Financial & Medical Assistance
      • Call Center & Information Services
      • Bringing Together Your Community
    • Mentoring organizations
      • NORD Member List
      • Start a Rare Disease Organization
      • Membership Program
      • Becoming Research Ready
      • Launching Registries & Natural History Studies
      • Patient-Focused Drug Development
    • Improving clinical care
      • Claim Your Care
      • Rare Disease Centers of Excellence
      • Continuing Medical Education (CME)
    • Partnering with the community
      • Corporate Council
      • National Partnerships
      • Global Parnerships
    • NORD® Living Rare, Living Stronger® Patient & Family Meeting
      • Learn More
  • Advancing Research
    • For patients
      • List of Rare Diseases
      • Gene Therapy for Rare Disease
      • Find Clinical Trials & Research Studies
    • For researchers
      • Request for Proposals
      • Research Grant Programs
      • Data Standards for Rare Diseases
    • For clinicians
      • Resources for Patients
      • Find a Rare Disease Care Center
      • Continuing Medical Education (CME)
    • Connect
      • IAMRARE® Program Powered by NORD
      • Rare Disease Cures Accelerator (RDCA-DAP)
      • All of Us Study
      • Add Your Expertise
    • NORD Rare Disease Scientific Symposium
      • Learn More
  • Driving Policy
    • NORD policy and you
      • Today’s Policy Issues
      • NORD’s Policy Statements
      • Rare Disease Advisory Councils
      • NORD State Report Card
    • Taking action
      • Join the Rare Action Network®
      • Contact your Representative
      • Take Action
      • Advocate for Rare Disease Policies as a Health Care Professional
    • Join A Current Campaign.
      • Learn about our current policy goals
  • Get Involved
    • Raising awareness and funds with NORD
      • Do-It-Yourself NORD Fundraiser
      • NORD Students for Rare
      • Sports & Fitness Fundraisers
      • Media Inquiries
    • In your community
      • Attend An Upcoming Event
      • Find a Rare Disease Patient Organization
      • Stay Informed With NORD’s Email Newsletter
      • Rare Disease Day®
    • Patient stories
      • Share Your Story
      • Careers At NORD
      • Intern At NORD
      • Jobs At Patient Disease Organizations
    • Show your support
      • Donate
      • Volunteer Application
      • Visit the NORD Store
  • Rare Disease News
  • Resource Library
  • About Us
  • For Clinicians & Researchers
  • For Patient Organizations
Home / Patient Organizations / Patient Organizations
Asherman’s Syndrome Online Community
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/ashermans-syndrome-online-community/
Ver perfil >
ASK About * Special * Kids
Teléfono: 317-257-8683 Correo electrónico: [email protected] Fax: 317-251-7488
https://rarediseases.org/es/organizations/ask-about-special-kids/
Ver perfil >
Asociacion Colombiana De Pacientes Con Enfermedades De Deposito Lisosomal Y Otras Enfermedades Huerfanas
https://rarediseases.org/es/organizations/asociacion-colombiana-de-pacientes-con-enfermedades-de-deposito-lisosomal-y-otras-enfermedades-huerfanas/
Ver perfil >
Asociacion de Sindrome Miastenico Congenito – Congenital Myasthenic Syndrome Association
Enfermedades raras relacionadas: Congenital Myasthenic Syndromes
https://rarediseases.org/es/organizations/asociacion-de-sindrome-miastenico-congenito-congenital-myasthenic-syndrome-association/
Ver perfil >
Asociación Española de Síndrome de Nariz Vacía
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Nariz Vacía
https://rarediseases.org/es/organizations/asociacion-espanola-de-sindrome-de-nariz-vacia/
Ver perfil >
ASOCIACIÓN SINDROME DE MYHRE ESPAÑA
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Myhre Syndrome
https://rarediseases.org/es/organizations/asociacion-sindrome-de-myhre-espana/
Ver perfil >
Association Aux Pas Du Coeur
https://rarediseases.org/es/organizations/association-aux-pas-du-coeur/
Ver perfil >
Association Congolaise du Vitiligo
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/association-congolaise-du-vitiligo/
Ver perfil >
Association For Bladder Exstrophy Community
Teléfono: 414-918-9002 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Bladder Exstrophy-Epispadias-Cloacal Exstrophy Complex
https://rarediseases.org/es/organizations/association-for-bladder-exstrophy-community/
Ver perfil >
Association for Children with a Disability
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/association-for-children-with-a-disability/
Ver perfil >
Association For Creatine Deficiencies (ACD)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndromes de deficiencia de creatina cerebral, Deficiencia del Transportador de Creatina, Deficiencia de L-arginina:glicina amidinotransferasa, ...
https://rarediseases.org/es/organizations/association-for-creatine-deficiencies-acd/
Ver perfil >
Association for Frontotemporal Degeneration (AFTD)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Progressive Supranuclear Palsy, Trastornos relacionados con CHCHD10, Frontotemporal Degeneration, ...
https://rarediseases.org/es/organizations/association-for-frontotemporal-degeneration-aftd/
Ver perfil >
Association for Glycogen Storage Disease (AGSD)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Adult Polyglucosan Body Disease, Glycogen Storage Disease Type VI, Glycogen Storage Disease Type IX, ...
https://rarediseases.org/es/organizations/association-for-glycogen-storage-disease-agsd/
Ver perfil >
Association for Glycogen Storage Disease (UK) Ltd
Teléfono: 300-123-2790 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Adult Polyglucosan Body Disease, Glycogen Storage Disease Type VI, Glycogen Storage Disease Type IX, ...
https://rarediseases.org/es/organizations/association-for-glycogen-storage-disease-uk-ltd/
Ver perfil >
Association for Multiple Endocrine Neoplasia Disorders (AMEND)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Zollinger-Ellison Syndrome, Neoplasia endocrina múltiple tipo 2, Multiple Endocrine Neoplasia Type 1, ...
https://rarediseases.org/es/organizations/association-for-multiple-endocrine-neoplasia-disorders-amend/
Ver perfil >
Association For Multiple Endocrine Neoplasia Disorders USA
Miembro NORD
Teléfono: 812-329-0312 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Neoplasia endocrina múltiple tipo 2, Multiple Endocrine Neoplasia Type 1
https://rarediseases.org/es/organizations/association-of-multiple-endocrine-neoplasia-disorders-usa/
Ver perfil >
Association Francophone ds Glycogenoses
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/association-francophone-ds-glycogenoses/
Ver perfil >
Association Fransaise Contre l’amylose
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/association-fransaise-contre-lamylose/
Ver perfil >
Association of Cancer Care Centers
Fax: 301-770-1949
Enfermedades raras relacionadas: Linfoma de células del manto, Linfoma primario del sistema nervioso central
https://rarediseases.org/es/organizations/association-of-cancer-care-centers/
Ver perfil >
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Vómitos Cíclicos, Enfermedad Celíaca Refractaria, Síndrome del intestino corto, ...
https://rarediseases.org/es/organizations/association-of-gastrointestinal-motility-disorders-inc-agmd/
Ver perfil >
Associazione Internazionale Ring 14
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Chromosome 14 Ring
https://rarediseases.org/es/organizations/associazione-internazionale-ring-14/
Ver perfil >
Associazione Italiana Mucopolisaccaridosi E Malattie Affini
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/associazione-italiana-mucopolisaccaridosi-e-malattie-affini/
Ver perfil >
Asthma and Allergy Foundation of America, Inc.
Teléfono: 202-466-7643 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Urticaria por frío, Urticaria acuagénica
https://rarediseases.org/es/organizations/asthma-and-allergy-foundation-of-america-inc/
Ver perfil >
Asthma Society of Canada
Teléfono: 416-787-4050 Correo electrónico: [email protected] Fax: 416-787-5807
https://rarediseases.org/es/organizations/asthma-society-of-canada/
Ver perfil >
ASXL Rare Research Endowment (ARRE) Foundation
Miembro NORD
Teléfono: 207-881-8080 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Trastorno asociado a ASXL3, Síndrome de Bohring-Opitz, Síndrome de Shashi-Peña ...
https://rarediseases.org/es/organizations/asxl-rare-research-endowment-arre-foundation/
Ver perfil >
ATAD3A Patient Advocacy Alliance
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/atad3a-patient-advocacy-alliance/
Ver perfil >
Ataxia Telangiectasia Children’s Project, Inc
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/ataxia-telangiectasia-childrens-project-inc/
Ver perfil >
Ataxia Telangiectasia Children’s Project, Inc (A-T)
Teléfono: 954-481-6611 Correo electrónico: [email protected] Fax: 954-725-1153
Enfermedades raras relacionadas: Ataxia Telangiectasia
https://rarediseases.org/es/organizations/ataxia-telangiectasia-childrens-project-inc-a-t/
Ver perfil >
Ataxia-Telangiectasia Society (UK)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Ataxia Telangiectasia
https://rarediseases.org/es/organizations/ataxia-telangiectasia-society-uk/
Ver perfil >
Atlantis Community, Inc.
Teléfono: 303-733-7324 Fax: 303-733-6211
https://rarediseases.org/es/organizations/atlantis-community-inc/
Ver perfil >
Atresia/Microtia Online E-mail Support Group
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Oculo-Auriculo-Vertebral Spectrum
https://rarediseases.org/es/organizations/atresia-microtia-online-e-mail-support-group/
Ver perfil >
Atypical HUS Foundation
Enfermedades raras relacionadas: Atypical Hemolytic Uremic Syndrome
https://rarediseases.org/es/organizations/atypical-hus-foundation/
Ver perfil >
Ausee Inc.
https://rarediseases.org/es/organizations/ausee-inc/
Ver perfil >
Austin 1st Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/austin-1st-foundation/
Ver perfil >
Australasian Blistering Diseases Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Autoimmune Blistering Diseases, Mucous Membrane Pemphigoid, Dermatitis Herpetiformis, ...
https://rarediseases.org/es/organizations/australasian-blistering-diseases-foundation/
Ver perfil >
Autism Research Institute
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/autism-research-institute/
Ver perfil >
Autoimmune Association
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Embolia de líquido amniótico, Anemia autoinmune hemolítica tipo caliente, Esclerosis Múltiple, ...
https://rarediseases.org/es/organizations/autoimmune-association/
Ver perfil >
Autoimmune Encephalitis Alliance (AE Alliance)
Miembro NORD
Teléfono: 919-602-1484 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/autoimmune-encephalitis-alliance-ae-alliance/
Ver perfil >
Autoimmune Hepatitis Association (AIHA)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Autoimmune Hepatitis
https://rarediseases.org/es/organizations/autoimmune-hepatitis-association-aiha/
Ver perfil >
Autoinflammatory Alliance
Miembro NORD
Teléfono: 415-831-8782 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome Periódico Asociado al Receptor del Factor de Necrosis Tumoral (TRAPS), Autoinflamación con Enterocolitis Infantil (AIFEC), Familial Cold Autoinflammatory Syndrome, ...
https://rarediseases.org/es/organizations/autoinflammatory-alliance/
Ver perfil >
Autonomic Disorders Consortium
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Orthostatic Hypotension, Atrofia multisistémica
https://rarediseases.org/es/organizations/autonomic-disorders-consortium/
Ver perfil >
Avalon Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Hypophosphatasia
https://rarediseases.org/es/organizations/avalon-foundation/
Ver perfil >
Avery’s Angels Gastroschisis Foundation
Enfermedades raras relacionadas: Gastrosquisis
https://rarediseases.org/es/organizations/averys-angels-gastroschisis-foundation/
Ver perfil >
Avery’s Hope
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Microvillus Inclusion Disease
https://rarediseases.org/es/organizations/averys-hope/
Ver perfil >
AXYS
Correo electrónico: [email protected]
Enfermedades raras relacionadas: XYY Syndrome, Trisomía X (síndrome del triple X o 47, XXX), Síndrome 48,XXYY, ...
https://rarediseases.org/es/organizations/axys/
Ver perfil >
Baby’s Breath
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/babys-breath/
Ver perfil >
Bachmann-Strauss Dystonia & Parkinson Foundation
Fax: 212-682-6156
Enfermedades raras relacionadas: Síndrome de Kufor Rakeb
https://rarediseases.org/es/organizations/bachmann-strauss-dystonia-parkinson-foundation/
Ver perfil >
BackCare, the Charity for Healthier Backs
Teléfono: 208-977-5474 Correo electrónico: [email protected] Fax: 208-943-5318
Enfermedades raras relacionadas: Arachnoiditis
https://rarediseases.org/es/organizations/backcare-the-charity-for-healthier-backs/
Ver perfil >
Bardet Biedl Syndrome Family Association
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Bardet-Biedl
https://rarediseases.org/es/organizations/bardet-biedl-syndrome-family-association/
Ver perfil >
Barth Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Barth Syndrome
https://rarediseases.org/es/organizations/barth-syndrome-foundation/
Ver perfil >
  1. «
  2. 1
  3. 2
  4. 3
  5. 4
  6. 5
  7. 6
  8. 7
  9. 8
  10. 9
  11. ...
  12. 48
  13. »
  • For Patients & Caregivers
  • For Organizations
  • For Clinicians & Researchers
Sign Up for NORD News

NORD Patient Hotline

NORD's Helpline is here for you. Reach us at 1-800-999-6673 or visit Contact Us.

Helpline hours:
Monday–Thursday 8:30am–7:00pm ET
Friday 8:30am–6:00pm ET

NORD Headquarters

120 Longwater Drive
Suite 105
Norwell, MA 02061

Mailing Address

7 Kenosia Avenue
Danbury, CT 06810
Phone: 203-744-0100
Fax: 203-263-9938

Donation Mailing Address

NORD, Inc. – Donations
Dept. 5930
P.O. Box 4110
Woburn, MA 01888

Other Locations

Newport Coast, CA Office
21163 Newport Coast Drive
Suite 254
Newport Coast, CA 92657
Washington, DC Office
1779 Massachusetts Avenue
Suite 500
Washington, DC 20036
  • Understanding Rare Disease
    • Where to Start
    • Stay Informed
    • Patient Stories
  • Living with a Rare Disease
    • Manage Your Care
    • We Can Help
  • Community Support
    • Where to Start
    • Mentoring Organizations
    • Improving Clinical Care
    • Partnering With the Community
    • Community Support
  • Advancing Research
    • For Patients
    • For Researchers
    • For Clinicians
    • Connect
    • Publications
    • Download a Subset of NORD’s Rare Disease Database
  • Driving Policy
    • NORD Policy Priorities
    • Taking Action
    • Join the Rare Action Network®
  • Donate
    • Donate
  • Get Involved
  • Legal
    • Brand Resources and Guidelines
    • Terms & Conditions
    • Privacy Policy
  • Rare Disease News
  • About Us
  • Media Inquiries
  • Get Involved
  • Careers at NORD
  • Sitemap
  • Contact Us

Copyright ©2026 NORD – National Organization for Rare Disorders, Inc. All rights reserved.

NORD is a registered 501(c)(3) charity organization.
Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

2023TRbadge_lg Platinum_Transparency_2024 Four_Stars_Charity

Make 2026 Count: Gift research, care, and advocacy for families everywhere

Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.


  • Donor-Advised Funds
  • Donate Stock
  • Planned Giving
NORD logo for Rare Disorders site.