• 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
After Org
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/after-org/
Ver perfil >
Agency for Healthcare Research and Quality
Teléfono: 301-427-1104
https://rarediseases.org/es/organizations/agency-for-healthcare-research-and-quality/
Ver perfil >
aHUS Alliance
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Atypical Hemolytic Uremic Syndrome
https://rarediseases.org/es/organizations/ahus-alliance/
Ver perfil >
Aicardi Syndrome Awareness and Support Group
https://rarediseases.org/es/organizations/aicardi-syndrome-awareness-and-support-group/
Ver perfil >
Aicardi Syndrome Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Aicardi Syndrome
https://rarediseases.org/es/organizations/aicardi-syndrome-foundation/
Ver perfil >
AIS-DSD Support Group
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Congenital Adrenal Hyperplasia, Deficiencia de WNT4, Síndrome de Mayer Rokitansky Küster Hauser, ...
https://rarediseases.org/es/organizations/ais-dsd-support-group/
Ver perfil >
Aislinn’s Wish Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/aislinns-wish-foundation/
Ver perfil >
Akari Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Distrofia muscular de Duchenne
https://rarediseases.org/es/organizations/akari-foundation-2/
Ver perfil >
AKU Society of North America
Teléfono: 800-549-8110
Enfermedades raras relacionadas: Alkaptonuria
https://rarediseases.org/es/organizations/aku-society-of-north-america/
Ver perfil >
Alagille Syndrome Alliance
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alagille Syndrome
https://rarediseases.org/es/organizations/alagille-syndrome-alliance/
Ver perfil >
Albinism Fellowship
Teléfono: 791-954-3518 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Ocular Albinism, Albinismo ocular con sordera neurosensorial tardía, Oculocutaneous Albinism ...
https://rarediseases.org/es/organizations/albinism-fellowship/
Ver perfil >
ALD Alliance
Miembro NORD
Teléfono: 917-750-9390 Correo electrónico: [email protected]
Enfermedades raras relacionadas: X-Linked Adrenoleukodystrophy
https://rarediseases.org/es/organizations/ald-alliance/
Ver perfil >
ALD Connect
Correo electrónico: [email protected]
Enfermedades raras relacionadas: X-Linked Adrenoleukodystrophy
https://rarediseases.org/es/organizations/ald-connect/
Ver perfil >
ALD Hope
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/ald-hope/
Ver perfil >
Alex TLC (The Leukodystrophy Charity)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: X-Linked Adrenoleukodystrophy, Leucoencefalopatía de inicio en el adulto con esferoides axonales y células gliales pigmentadas
https://rarediseases.org/es/organizations/alex-tlc-the-leukodystrophy-charity/
Ver perfil >
Alexander Graham Bell Association for the Deaf and Hard of Hearing
Teléfono: 202-337-5220 Correo electrónico: [email protected] Fax: 202-337-8314
Enfermedades raras relacionadas: Síndrome de Perrault, Síndrome de Wildervanck, Síndrome de Pendred, ...
https://rarediseases.org/es/organizations/alexander-graham-bell-association-for-the-deaf-and-hard-of-hearing/
Ver perfil >
Alkaptonuria Society
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alkaptonuria
https://rarediseases.org/es/organizations/alkaptonuria-society/
Ver perfil >
All Things Kabuki
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Kabuki
https://rarediseases.org/es/organizations/all-things-kabuki/
Ver perfil >
Alliance Against HMERF Muscular Dystrophy
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: myopathy, myofibrillar, 9, with early respiratory failure
https://rarediseases.org/es/organizations/alliance-against-hmerf-muscular-dystrophy/
Ver perfil >
Alliance for Technology Access
Teléfono: 731-554-5282 Correo electrónico: [email protected] Fax: 731-554-5283
https://rarediseases.org/es/organizations/alliance-for-technology-access/
Ver perfil >
Alliance to Cure Cavernous Malformation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Cavernous Malformation
https://rarediseases.org/es/organizations/alliance-to-cure-cavernous-malformation/
Ver perfil >
Alpha-1 Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de alfa-1 antitripsina
https://rarediseases.org/es/organizations/alpha-1-foundation/
Ver perfil >
Alpha-1 Research Registry
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de alfa-1 antitripsina
https://rarediseases.org/es/organizations/alpha-1-research-registry/
Ver perfil >
AlphaNet, Inc.
Enfermedades raras relacionadas: Deficiencia de alfa-1 antitripsina
https://rarediseases.org/es/organizations/alphanet-inc/
Ver perfil >
Alport Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Alport
https://rarediseases.org/es/organizations/alport-syndrome-foundation/
Ver perfil >
ALS Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: ALS Association, Primary Lateral Sclerosis, Esclerosis lateral amiotrófica ...
https://rarediseases.org/es/organizations/als-association/
Ver perfil >
ALS Network, formerly ALS Golden West
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/als-network-formerly-als-golden-west/
Ver perfil >
ALS Society of Canada
Teléfono: 905-248-2052 Fax: 905-248-2019
Enfermedades raras relacionadas: Esclerosis lateral amiotrófica
https://rarediseases.org/es/organizations/als-society-of-canada/
Ver perfil >
ALS Therapy Development Institute
Teléfono: 617-441-7200 Correo electrónico: [email protected] Fax: 617-441-7299
Enfermedades raras relacionadas: Esclerosis lateral amiotrófica
https://rarediseases.org/es/organizations/als-therapy-development-institute/
Ver perfil >
ALS United Connecticut
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/als-united-connecticut/
Ver perfil >
ALS United Mid-Atlantic
Correo electrónico: [email protected] Fax: 215-643-9307
https://rarediseases.org/es/organizations/als-united-mid-atlantic/
Ver perfil >
ALS United Rocky Mountain
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/als-united-rocky-mountain/
Ver perfil >
Alstrom Syndrome International
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/alstrom-syndrome-international-2/
Ver perfil >
Alstrom Syndrome International
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alström Syndrome
https://rarediseases.org/es/organizations/alstrom-syndrome-international/
Ver perfil >
Alstrom Syndrome UK
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alström Syndrome
https://rarediseases.org/es/organizations/alstrom-syndrome-uk/
Ver perfil >
Alternating Hemiplegia Of Childhood Foundation (AHCF)
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alternating Hemiplegia of Childhood
https://rarediseases.org/es/organizations/alternating-hemiplegia-of-childhood-foundation-ahcf/
Ver perfil >
Alveolar Capillary Dysplasia Association
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Displasia alveolar capilar con desalineación de las venas pulmonares
https://rarediseases.org/es/organizations/alveolar-capillary-dysplasia-association/
Ver perfil >
Alzheimer’s Association
Teléfono: 312-335-8700 Correo electrónico: [email protected] Fax: 866-699-1246
Enfermedades raras relacionadas: Alzheimer’s Disease, Síndrome de Klüver-Bucy, Enfermedad de Binswanger ...
https://rarediseases.org/es/organizations/alzheimers-association/
Ver perfil >
Alzheimer’s Disease Education and Referral Center
Teléfono: 301-495-3311 Correo electrónico: [email protected] Fax: 301-495-3334
Enfermedades raras relacionadas: Síndrome de Klüver-Bucy, Enfermedad de Binswanger
https://rarediseases.org/es/organizations/alzheimers-disease-education-and-referral-center/
Ver perfil >
Alzheimer’s Disease International
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/alzheimers-disease-international/
Ver perfil >
Alzheimer’s Foundation of America
Teléfono: 866-232-8484 Correo electrónico: [email protected] Fax: 646-638-1546
Enfermedades raras relacionadas: Alzheimer’s Disease
https://rarediseases.org/es/organizations/alzheimers-foundation-of-america/
Ver perfil >
Alzheimer’s Society (UK)
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/alzheimers-society-uk/
Ver perfil >
Ambiguous Genitalia Support Network
Teléfono: 209-727-0313
Enfermedades raras relacionadas: WAGR Syndrome/11p Deletion Syndrome, Congenital Adrenal Hyperplasia, Síndrome de abléfaron-macrostomía ...
https://rarediseases.org/es/organizations/ambiguous-genitalia-support-network/
Ver perfil >
American Academy of Allergy, Asthma and Immunology
Teléfono: 414-272-6071 Correo electrónico: [email protected] Fax: 414-276-3349
Enfermedades raras relacionadas: Familial Eosinophilic Cellulitis, Urticaria por frío, Erysipelas, ...
https://rarediseases.org/es/organizations/american-academy-of-allergy-asthma-and-immunology/
Ver perfil >
American Academy of Audiology
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome CHARGE, Síndrome de Treacher Collins, Síndrome de Wildervanck, ...
https://rarediseases.org/es/organizations/american-academy-of-audiology/
Ver perfil >
American Academy of Child & Adolescent Psychiatry
Teléfono: 202-966-7300 Correo electrónico: [email protected] Fax: 202-966-2891
https://rarediseases.org/es/organizations/american-academy-of-child-adolescent-psychiatry/
Ver perfil >
American Academy of Dermatology
Teléfono: 847-330-0230 Correo electrónico: [email protected] Fax: 847-240-1859
Enfermedades raras relacionadas: Cicatricial Alopecia, Psoriasis Pustulosa Generalizada
https://rarediseases.org/es/organizations/american-academy-of-dermatology/
Ver perfil >
American Academy of Facial Plastic And Reconstructive Surgery
Teléfono: 703-299-9291 Correo electrónico: [email protected] Fax: 703-299-8898
https://rarediseases.org/es/organizations/american-academy-of-facial-plastic-and-reconstructive-surgery/
Ver perfil >
American Academy of Family Physicians
Teléfono: 913-906-6000 Correo electrónico: [email protected] Fax: 913-906-6075
https://rarediseases.org/es/organizations/american-academy-of-family-physicians/
Ver perfil >
American Academy of Neurology
Teléfono: 612-928-6100 Correo electrónico: [email protected] Fax: 612-454-2746
https://rarediseases.org/es/organizations/american-academy-of-neurology/
Ver perfil >
  1. «
  2. 1
  3. 2
  4. 3
  5. 4
  6. 5
  7. 6
  8. 7
  9. ...
  10. 48
  11. »
  • 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.