• 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
Mountain States Genetics Foundation
Teléfono: 602-870-4752 Correo electrónico: [email protected] Fax: 602-870-4782
https://rarediseases.org/es/organizations/mountain-states-genetics-foundation/
Ver perfil >
Mouth Cancer Foundation
Teléfono: 192-495-0950 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mouth-cancer-foundation/
Ver perfil >
MOVE International
Teléfono: 661-843-4577 Correo electrónico: [email protected] Fax: 661-843-7765
https://rarediseases.org/es/organizations/move-international/
Ver perfil >
Movement Disorder Society
Teléfono: 414-276-2145 Correo electrónico: [email protected] Fax: 414-276-3349
Enfermedades raras relacionadas: Síndrome de Opsoclonus-Mioclono-Ataxia, Discinesia relacionada con ADCY5, Síndrome de Kufor Rakeb, ...
https://rarediseases.org/es/organizations/movement-disorder-society/
Ver perfil >
Mowat Wilson Support Group
Teléfono: 177-276-0119 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Mowat-Wilson Syndrome
https://rarediseases.org/es/organizations/mowat-wilson-support-group/
Ver perfil >
Mowat-Wilson Syndrome Foundation
Miembro NORD
Teléfono: 608-481-1157 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Mowat-Wilson Syndrome
https://rarediseases.org/es/organizations/mowat-wilson-syndrome-foundation/
Ver perfil >
Moyamoya Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de Moyamoya
https://rarediseases.org/es/organizations/moyamoya-foundation/
Ver perfil >
Moyamoya Foundation
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/moyamoya-foundation-2/
Ver perfil >
MpBC Global Alliance, Inc.
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mpbc-global-alliance-inc/
Ver perfil >
MPN Education Foundation
Teléfono: 480-443-1975 Correo electrónico: [email protected] Fax: 480-443-1154
Enfermedades raras relacionadas: Chronic Myelogenous Leukemia, Policitemia Vera, Mielofibrosis primaria, ...
https://rarediseases.org/es/organizations/mpn-education-foundation/
Ver perfil >
MPN Research Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Essential Thrombocythemia, Policitemia Vera, Mielofibrosis primaria ...
https://rarediseases.org/es/organizations/mpn-research-foundation/
Ver perfil >
MPS SuperHero Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mps-superhero-foundation/
Ver perfil >
MS Canada
Teléfono: 416-922-6065 Correo electrónico: [email protected] Fax: 416-922-7538
https://rarediseases.org/es/organizations/ms-canada/
Ver perfil >
MSS Research Foundation (Marshall-Smith Syndrome)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Marshall-Smith Syndrome
https://rarediseases.org/es/organizations/mss-research-foundation-marshall-smith-syndrome/
Ver perfil >
MSUD Family Support Group
Miembro NORD
Teléfono: 740-972-5619 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Enfermedad de la orina con olor a jarabe de arce (MSUD)
https://rarediseases.org/es/organizations/msud-family-support-group/
Ver perfil >
MTM-CNM Family Connection, Inc.
Enfermedades raras relacionadas: X-Linked Myotubular Myopathy
https://rarediseases.org/es/organizations/mtm-cnm-family-connection-inc/
Ver perfil >
Mucolipidosis IV (ML4) Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Mucolipidosis IV
https://rarediseases.org/es/organizations/mucolipidosis-iv-ml4-foundation/
Ver perfil >
Mucolipidosis Type IV Foundation, Inc. (ML4Fdn)
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Mucolipidosis IV
https://rarediseases.org/es/organizations/mucolipidosis-type-iv-foundation-inc-ml4fdn/
Ver perfil >
Multiple Myeloma Research Foundation
Teléfono: 203-229-0464 Correo electrónico: [email protected] Fax: 203-229-0572
Enfermedades raras relacionadas: Multiple Myeloma
https://rarediseases.org/es/organizations/multiple-myeloma-research-foundation/
Ver perfil >
Multiple Sclerosis Association of America
Teléfono: 856-488-4500 Correo electrónico: [email protected] Fax: 856-661-9797
Enfermedades raras relacionadas: Esclerosis Múltiple
https://rarediseases.org/es/organizations/multiple-sclerosis-association-of-america/
Ver perfil >
Multiple Sclerosis Foundation
Teléfono: 954-776-6805 Correo electrónico: [email protected] Fax: 954-938-8708
Enfermedades raras relacionadas: Esclerosis Múltiple
https://rarediseases.org/es/organizations/multiple-sclerosis-foundation/
Ver perfil >
Multiple Sclerosis International Federation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Esclerosis Múltiple
https://rarediseases.org/es/organizations/multiple-sclerosis-international-federation/
Ver perfil >
Multiple Sclerosis Society of Ireland
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/multiple-sclerosis-society-of-ireland/
Ver perfil >
Multiple Sclerosis Society UK
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/multiple-sclerosis-society-uk/
Ver perfil >
Multiple Sulfatase Deficiency Action Foundation
Enfermedades raras relacionadas: Multiple Sulfatase Deficiency
https://rarediseases.org/es/organizations/multiple-sulfatase-deficiency-action-foundation/
Ver perfil >
Munroe-Meyer Institute for Genetics and Rehabilitation
Teléfono: 402-559-6430 Correo electrónico: [email protected] Fax: 402-559-5737
https://rarediseases.org/es/organizations/munroe-meyer-institute-for-genetics-and-rehabilitation/
Ver perfil >
Muscular Dystrophy Association
Miembro NORD
Teléfono: 800-572-1717 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome de Walker Warburg, Titinopatía dominante, Parálisis Periódica Hipocalémica, ...
https://rarediseases.org/es/organizations/muscular-dystrophy-association/
Ver perfil >
Muscular Dystrophy Association of Kosovo
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Distrofia muscular de Duchenne
https://rarediseases.org/es/organizations/muscular-dystrophy-association-of-kosovo/
Ver perfil >
Muscular Dystrophy Association of New Zealand, Inc.
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Distal Myopathy, Facioscapulohumeral Muscular Dystrophy
https://rarediseases.org/es/organizations/muscular-dystrophy-association-of-new-zealand-inc/
Ver perfil >
Muscular Dystrophy Australia
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Distal Myopathy, Collagen Type VI-Related Disorders, Facioscapulohumeral Muscular Dystrophy ...
https://rarediseases.org/es/organizations/muscular-dystrophy-australia/
Ver perfil >
Muscular Dystrophy Campaign
Teléfono: 207-803-4800 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Myotonic Dystrophy, Miopatía nemalínica, Congenital Myasthenic Syndromes, ...
https://rarediseases.org/es/organizations/muscular-dystrophy-campaign/
Ver perfil >
Muscular Dystrophy Canada
Correo electrónico: [email protected] Fax: 416-488-7523
Enfermedades raras relacionadas: Distal Myopathy, Síndrome de Guillain Barre, Síndrome de Walker Warburg, ...
https://rarediseases.org/es/organizations/muscular-dystrophy-canada/
Ver perfil >
Muscular Dystrophy Ireland
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Distal Myopathy, Facioscapulohumeral Muscular Dystrophy
https://rarediseases.org/es/organizations/muscular-dystrophy-ireland/
Ver perfil >
Musella Foundation For Brain Tumor Research & Information, Inc
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/musella-foundation-for-brain-tumor-research-information-inc/
Ver perfil >
MVA Society
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: mosaic variegated aneuploidy syndrome, mosaic variegated aneuploidy syndrome 1, mosaic variegated aneuploidy syndrome 2, ...
https://rarediseases.org/es/organizations/mva-society/
Ver perfil >
Myasthenia Gravis Foundation of America, Inc
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Congenital Myasthenic Syndromes, Autoimmune Polyendocrine Syndrome Type II, Lambert-Eaton Myasthenic Syndrome, ...
https://rarediseases.org/es/organizations/myasthenia-gravis-foundation-of-america-inc/
Ver perfil >
Myaware (UK)
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/myaware-uk/
Ver perfil >
Myelin Disorders Bioregistry Project (MDBP)
Teléfono: 202-476-6230 Correo electrónico: [email protected] Fax: 202-476-5226
Enfermedades raras relacionadas: Trastorno Relacionado con el Receptor del Factor Estimulante de Colonias 1, Leucodistrofia
https://rarediseases.org/es/organizations/myelin-disorders-bioregistry-project-mdbp/
Ver perfil >
Myelin Project – Merged with ALD Connect
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/myelin-project-merged-with-ald-connect/
Ver perfil >
Myelodysplastic Syndromes Foundation, Inc
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Síndrome MIRAGE
https://rarediseases.org/es/organizations/myelodysplastic-syndromes-foundation-inc/
Ver perfil >
MyFace
Teléfono: 212-263-6656 Correo electrónico: [email protected] Fax: 212-263-7534
Enfermedades raras relacionadas: Síndrome de Binder, Summitt Syndrome, Sakati Syndrome, ...
https://rarediseases.org/es/organizations/myface/
Ver perfil >
Myhre Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Myhre Syndrome
https://rarediseases.org/es/organizations/myhre-syndrome-foundation/
Ver perfil >
Myocarditis Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Myocarditis, Endomyocardial Fibrosis, Miocarditis de células gigantes ...
https://rarediseases.org/es/organizations/myocarditis-foundation/
Ver perfil >
Myocarditis Program at Mayo Clinic
Teléfono: 507-538-3270 Correo electrónico: [email protected] Fax: 507-266-0228
https://rarediseases.org/es/organizations/myocarditis-program-at-mayo-clinic/
Ver perfil >
Myositis Support and Understanding Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Dermatomyositis, Sporadic Inclusion Body Myositis, Polymyositis and Necrotizing Myopathy ...
https://rarediseases.org/es/organizations/myositis-support-and-understanding-association/
Ver perfil >
Myositis Support Group
Teléfono: 238-044-9708 Correo electrónico: [email protected] Fax: 238-039-6402
Enfermedades raras relacionadas: Síndrome de Antisintetasa, Polymyositis and Necrotizing Myopathy, Dermatomyositis ...
https://rarediseases.org/es/organizations/myositis-support-group/
Ver perfil >
Myositis Support Group at the Hospital for Special Surgery
Teléfono: 212-774-7623 Correo electrónico: [email protected] Fax: 212-774-2333
Enfermedades raras relacionadas: Sporadic Inclusion Body Myositis
https://rarediseases.org/es/organizations/myositis-support-group-at-the-hospital-for-special-surgery/
Ver perfil >
Myotonic Dystrophy Foundation
Miembro NORD
Teléfono: 415-800-7777 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Myotonic Dystrophy
https://rarediseases.org/es/organizations/myotonic-dystrophy-foundation/
Ver perfil >
Myotonic Dystrophy Support Group
Teléfono: 115-987-5869 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Myotonic Dystrophy
https://rarediseases.org/es/organizations/myotonic-dystrophy-support-group/
Ver perfil >
Myotubular Trust
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Centronuclear Myopathy, X-Linked Myotubular Myopathy
https://rarediseases.org/es/organizations/myotubular-trust/
Ver perfil >
  1. «
  2. 1
  3. ...
  4. 26
  5. 27
  6. 28
  7. 29
  8. 30
  9. 31
  10. 32
  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.