• 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
Superior Mesenteric Artery Syndrome Research Awareness And Support
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de la arteria mesentérica superior
https://rarediseases.org/es/organizations/superior-mesenteric-artery-syndrome-research-awareness-and-support/
Ver perfil >
Support for People with Oral and Head and Neck Cancer, Inc.
Correo electrónico: [email protected] Fax: 516-671-8794
Enfermedades raras relacionadas: Cervical Teratoma, Sinonasal Undifferentiated Carcinoma, Polymorphous Low-Grade Adenocarcinoma, ...
https://rarediseases.org/es/organizations/support-for-people-with-oral-and-head-and-neck-cancer-inc/
Ver perfil >
Support Organization for Trisomy 13/18 and Related Disorders, UK
Teléfono: 121-351-3122 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Trisomy 9p (Multiple Variants), Trisomy 13 Syndrome, Trisomía 9 en mosaico, ...
https://rarediseases.org/es/organizations/support-organization-for-trisomy-13-18-and-related-disorders-uk/
Ver perfil >
Support Organization for Trisomy 18, 13, and Related Disorders
Correo electrónico: [email protected] Fax: 585-594-1957
Enfermedades raras relacionadas: Trisomy 9p (Multiple Variants), Trisomy 13 Syndrome, Trisomía 9 en mosaico, ...
https://rarediseases.org/es/organizations/support-organization-for-trisomy-18-13-and-related-disorders/
Ver perfil >
Supporting Aussie Kids with Kabuki Syndrome
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Kabuki
https://rarediseases.org/es/organizations/supporting-aussie-kids-with-kabuki-syndrome/
Ver perfil >
SupportWorks
Teléfono: 704-331-9500 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/supportworks/
Ver perfil >
SWAN UK
Teléfono: 207-704-3141 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/swan-uk/
Ver perfil >
Swedish Association of Rare Disorders
Teléfono: 468-764-4999 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/swedish-association-of-rare-disorders/
Ver perfil >
Swedish Hemophilia Society
https://rarediseases.org/es/organizations/swedish-hemophilia-society/
Ver perfil >
Sweet’s Syndrome UK
Enfermedades raras relacionadas: Sweet Syndrome
https://rarediseases.org/es/organizations/sweets-syndrome-uk/
Ver perfil >
Syndromes Without A Name USA
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/syndromes-without-a-name-usa/
Ver perfil >
Syngap Research Fund
Enfermedades raras relacionadas: Encefalopatía epiléptica y del desarrollo asociada al gen SYNGAP1
https://rarediseases.org/es/organizations/syngap-research-fund/
Ver perfil >
Taiwan Foundation for Rare Disorders
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/taiwan-foundation-for-rare-disorders/
Ver perfil >
Taking Action Against Language Disorders for Kids (TALK)
Teléfono: 541-389-0004 Fax: 503-389-0004
Enfermedades raras relacionadas: Trastorno de Haploinsuficiencia SETBP1
https://rarediseases.org/es/organizations/taking-action-against-language-disorders-for-kids-talk/
Ver perfil >
Taking Control of Your Diabetes
Teléfono: 858-755-5683 Correo electrónico: [email protected] Fax: 858-755-6854
https://rarediseases.org/es/organizations/taking-control-of-your-diabetes/
Ver perfil >
Talia Duff Foundation, Inc.
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Charcot-Marie-Tooth Disease
https://rarediseases.org/es/organizations/talia-duff-foundation-inc/
Ver perfil >
TANGO2 Research Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Trastorno por Deficiencia de TANGO2
https://rarediseases.org/es/organizations/tango2-research-foundation/
Ver perfil >
TargetCancer Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Cáncer de esófago, Colangiocarcinoma
https://rarediseases.org/es/organizations/targetcancer-foundation/
Ver perfil >
Tarlov Cyst Disease Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Tarlov Cysts
https://rarediseases.org/es/organizations/tarlov-cyst-disease-foundation/
Ver perfil >
Taste and Smell Health Center at University of Connecticut
Teléfono: 860-679-2459 Correo electrónico: [email protected] Fax: 860-679-7698
https://rarediseases.org/es/organizations/taste-and-smell-health-center-at-university-of-connecticut/
Ver perfil >
Tatton Brown Rahman Syndrome Community
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Tatton Brown Rahman
https://rarediseases.org/es/organizations/tatton-brown-rahman-syndrome-community/
Ver perfil >
Taylor Bug Kisses Foundation
Teléfono: 309-451-1431 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Smith-Magenis
https://rarediseases.org/es/organizations/taylor-bug-kisses-foundation/
Ver perfil >
Team Audrey
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/team-audrey/
Ver perfil >
Team PHenomenal Hope
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Hipertensión arterial pulmonar
https://rarediseases.org/es/organizations/team-phenomenal-hope/
Ver perfil >
Team Telomere
Miembro NORD
Teléfono: 208-215-1347 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Dyskeratosis Congenita, Dyskeratosis congenita and related telomere biology disorders
https://rarediseases.org/es/organizations/team-telomere/
Ver perfil >
Team Titin, Inc.
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Titinopatía dominante, Titinopatía recesiva
https://rarediseases.org/es/organizations/team-titin-inc/
Ver perfil >
TED Community Organization
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/ted-community-organization-2/
Ver perfil >
TED Community Organization
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad ocular tiroidea
https://rarediseases.org/es/organizations/ted-community-organization/
Ver perfil >
Telecommunications for the Deaf and Hard of Hearing, Inc.
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/telecommunications-for-the-deaf-and-hard-of-hearing-inc/
Ver perfil >
TESS Research Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: TESS Research Foundation, Trastorno del transportador de citrato SLC13A5
https://rarediseases.org/es/organizations/tess-research-foundation/
Ver perfil >
Test Org Account 1
Miembro NORD
https://rarediseases.org/es/organizations/test-org-account-1/
Ver perfil >
Tetrasomy 18p Canada
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/tetrasomy-18p-canada/
Ver perfil >
Tetrasomy/Pentasomy X Support Group
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/tetrasomy-pentasomy-x-support-group/
Ver perfil >
Texas Neurofibromatosis Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/texas-neurofibromatosis-foundation/
Ver perfil >
Thalassaemia International Federation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/thalassaemia-international-federation/
Ver perfil >
Thalassemia Support Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Alpha Thalassemia, Síndrome ATR-16, Beta Thalassemia, ...
https://rarediseases.org/es/organizations/thalassemia-support-foundation/
Ver perfil >
The AADC Research Trust
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de L-aminoácido aromático decarboxilasa
https://rarediseases.org/es/organizations/the-aadc-research-trust/
Ver perfil >
The Aarskog Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/the-aarskog-foundation/
Ver perfil >
The AIP BIPOC Network
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Cicatricial Alopecia, Miastenia Grave, Enfermedad Mixta del Tejido Conectivo, ...
https://rarediseases.org/es/organizations/the-aip-bipoc-network/
Ver perfil >
The Allo Hope Foundation
Miembro NORD
Teléfono: 205-331-6430 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad Hemolítica del Feto y del Recién Nacido
https://rarediseases.org/es/organizations/the-allo-hope-foundation/
Ver perfil >
The Aneurysm and AVM Foundation
Enfermedades raras relacionadas: Arteriovenous Malformation
https://rarediseases.org/es/organizations/the-aneurysm-and-avm-foundation/
Ver perfil >
The Arc of Greater Cleveland
Teléfono: 216-622-0755 Correo electrónico: [email protected] Fax: 216-736-3393
https://rarediseases.org/es/organizations/the-arc-of-greater-cleveland/
Ver perfil >
The Arc of the Capital Area
Teléfono: 512-476-7044 Correo electrónico: [email protected] Fax: 512-476-9054
https://rarediseases.org/es/organizations/the-arc-of-the-capital-area/
Ver perfil >
The Arc of the United States
Correo electrónico: [email protected] Fax: 202-534-3731
Enfermedades raras relacionadas: Deficiencia de folato cerebral, Síndrome CHARGE, Síndrome de megalocórnea-discapacidad intelectual, ...
https://rarediseases.org/es/organizations/the-arc-of-the-united-states/
Ver perfil >
The Art of Science for Kids Foundation
https://rarediseases.org/es/organizations/the-art-of-science-for-kids-foundation/
Ver perfil >
The Arthrogryposis Group
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Trismo-Pseudocamptodactilia, Artrogriposis Múltiple Congénita, Gordon Syndrome ...
https://rarediseases.org/es/organizations/the-arthrogryposis-group/
Ver perfil >
The Association for the Severely Handicapped
Teléfono: 202-540-9014 Correo electrónico: [email protected] Fax: 202-540-9019
https://rarediseases.org/es/organizations/the-association-for-the-severely-handicapped/
Ver perfil >
The Atypical HUS Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/the-atypical-hus-foundation/
Ver perfil >
The Australian Cystinosis Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/the-australian-cystinosis-foundation/
Ver perfil >
The Baker Gordon Syndrome Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/the-baker-gordon-syndrome-foundation/
Ver perfil >
  1. «
  2. 1
  3. ...
  4. 40
  5. 41
  6. 42
  7. 43
  8. 44
  9. 45
  10. 46
  11. 47
  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.