• 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
MedicAlert Foundation International
Teléfono: 209-669-2401 Correo electrónico: [email protected] Fax: 209-669-2456
Enfermedades raras relacionadas: Neuroleptic Malignant Syndrome, Porfiria Variegata, Enfermedad central core, ...
https://rarediseases.org/es/organizations/medicalert-foundation-international/
Ver perfil >
Medicare Rights Center
Teléfono: 212-869-3850 Correo electrónico: [email protected] Fax: 212-869-3532
https://rarediseases.org/es/organizations/medicare-rights-center/
Ver perfil >
MEF2C Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Deficiencia de MEF2C
https://rarediseases.org/es/organizations/mef2c-foundation/
Ver perfil >
Melanin Children Matter Inc
Correo electrónico: [email protected]
Enfermedades raras relacionadas: juvenile amyotrophic lateral sclerosis, amyotrophic lateral sclerosis type 2, juvenile
https://rarediseases.org/es/organizations/melanin-children-matter-inc/
Ver perfil >
Melanoma Research Foundation (MRF)
Teléfono: 202-347-9675 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Melanoma ocular
https://rarediseases.org/es/organizations/melanoma-research-foundation-mrf/
Ver perfil >
Mellie J Foundation
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Neuromyelitis Optica Spectrum Disorder
https://rarediseases.org/es/organizations/mellie-j-foundation/
Ver perfil >
Melorheostosis Association
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Melorreostosis
https://rarediseases.org/es/organizations/melorheostosis-association/
Ver perfil >
Memorial Sloan-Kettering Cancer Center
Teléfono: 212-639-2000 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/memorial-sloan-kettering-cancer-center/
Ver perfil >
MENCAP
Teléfono: 207-454-0454 Correo electrónico: [email protected] Fax: 207-608-3254
https://rarediseases.org/es/organizations/mencap/
Ver perfil >
Mended Hearts, Inc.
Teléfono: 214-296-9252 Correo electrónico: [email protected] Fax: 214-295-9552
https://rarediseases.org/es/organizations/mended-hearts-inc/
Ver perfil >
Meningitis Foundation of America
Teléfono: 480-270-2652 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Meningococcal Meningitis
https://rarediseases.org/es/organizations/meningitis-foundation-of-america/
Ver perfil >
Meningitis Research Foundation (UK)
Teléfono: 145-428-1811 Correo electrónico: [email protected] Fax: 145-428-1094
Enfermedades raras relacionadas: Meningococcal Meningitis
https://rarediseases.org/es/organizations/meningitis-research-foundation-uk/
Ver perfil >
Mental Health America
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Kleine-Levin Syndrome, Discinesia tardía, Neurasthenia, ...
https://rarediseases.org/es/organizations/mental-health-america/
Ver perfil >
Mental Health America of Illinois
Teléfono: 312-368-9070 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mental-health-america-of-illinois/
Ver perfil >
Mental Health Foundation (UK)
Teléfono: 207-803-1100 Correo electrónico: [email protected] Fax: 207-803-1111
https://rarediseases.org/es/organizations/mental-health-foundation-uk/
Ver perfil >
MEPAN Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mepan-foundation/
Ver perfil >
Mercy Medical Angels
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mercy-medical-angels/
Ver perfil >
Mesothelioma Applied Research Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mesothelioma-applied-research-foundation/
Ver perfil >
Metabolic Clinic at The Children’s Hospital
Teléfono: 720-777-1234 Correo electrónico: [email protected] Fax: 303-724-2338
https://rarediseases.org/es/organizations/metabolic-clinic-at-the-childrens-hospital/
Ver perfil >
Metabolic Support UK
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Glucose-Galactose Malabsorption, Deficiencia de Piruvato Carboxilasa, Trimetilaminuria, ...
https://rarediseases.org/es/organizations/metabolic-support-uk/
Ver perfil >
Metatropic Dysplasia Dwarf Registry
Teléfono: 408-244-6354 Correo electrónico: [email protected] Fax: 408-296-6317
Enfermedades raras relacionadas: Metatropic Dysplasia I
https://rarediseases.org/es/organizations/metatropic-dysplasia-dwarf-registry/
Ver perfil >
MG Ohio
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mg-ohio/
Ver perfil >
MHE and Me- A Support Group for Kids with Multiple Hereditary Exostoses
Teléfono: 845-258-6058 Correo electrónico: [email protected] Fax: 845-258-6058
Enfermedades raras relacionadas: Hereditary Multiple Osteochondromas
https://rarediseases.org/es/organizations/mhe-and-me-a-support-group-for-kids-with-multiple-hereditary-exostoses/
Ver perfil >
MHE Coalition
Teléfono: 440-842-8817 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Hereditary Multiple Osteochondromas
https://rarediseases.org/es/organizations/mhe-coalition/
Ver perfil >
MHE Learning System
Miembro NORD
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mhe-learning-system/
Ver perfil >
MHE Research Foundation
Teléfono: 718-569-0479 Correo electrónico: [email protected] Fax: 201-786-1758
Enfermedades raras relacionadas: Hereditary Multiple Osteochondromas
https://rarediseases.org/es/organizations/mhe-research-foundation/
Ver perfil >
Miami Project to Cure Paralysis
Teléfono: 305-243-6001 Correo electrónico: [email protected] Fax: 305-243-6017
https://rarediseases.org/es/organizations/miami-project-to-cure-paralysis/
Ver perfil >
MIB (Make It Better) Agents
https://rarediseases.org/es/organizations/mib-make-it-better-agents/
Ver perfil >
Michigan Diabetes Research and Training Center
Teléfono: 734-763-5730 Correo electrónico: [email protected] Fax: 734-647-2307
https://rarediseases.org/es/organizations/michigan-diabetes-research-and-training-center/
Ver perfil >
Michigan State University Human Genetics Program
Teléfono: 517-353-3003 Correo electrónico: [email protected] Fax: 517-353-8464
https://rarediseases.org/es/organizations/michigan-state-university-human-genetics-program/
Ver perfil >
Micro & Anophthalmic Children’s Society
Teléfono: 870-600-6227 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Oculocerebrocutaneous Syndrome
https://rarediseases.org/es/organizations/micro-anophthalmic-childrens-society/
Ver perfil >
Microcephaly Support Group
Teléfono: 163-855-2689 Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/microcephaly-support-group/
Ver perfil >
Mid-Atlantic Connection for PKU and Allied Disorders, Inc.
Teléfono: 717-872-7546 Correo electrónico: [email protected] Fax: 717-872-7546
https://rarediseases.org/es/organizations/mid-atlantic-connection-for-pku-and-allied-disorders-inc/
Ver perfil >
Mila’s Miracle Foundation
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/milas-miracle-foundation/
Ver perfil >
Miracle-Ear Children’s Foundation
Fax: 763-268-4295
https://rarediseases.org/es/organizations/miracle-ear-childrens-foundation/
Ver perfil >
Mission MSA
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Atrofia multisistémica
https://rarediseases.org/es/organizations/multiple-system-atrophy-coalition/
Ver perfil >
Mission: Cure
Correo electrónico: [email protected]
https://rarediseases.org/es/organizations/mission-cure/
Ver perfil >
Mississippi Metabolics Foundation
https://rarediseases.org/es/organizations/mississippi-metabolics-foundation/
Ver perfil >
MitoAction
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Pyruvate Dehydrogenase Complex Deficiency, Deficiencia de Piruvato Carboxilasa, Síndrome de MERRF, ...
https://rarediseases.org/es/organizations/mitoaction/
Ver perfil >
Mitochondria Research Society
Teléfono: 716-845-8017 Correo electrónico: [email protected] Fax: 716-845-1047
Enfermedades raras relacionadas: Maternally Inherited Leigh Syndrome and NARP Syndrome
https://rarediseases.org/es/organizations/mitochondria-research-society/
Ver perfil >
Mitochondrial Medicine Society
Enfermedades raras relacionadas: Primary Mitochondrial Myopathies, Deficiencia de Timidina Quinasa 2, Maternally Inherited Leigh Syndrome and NARP Syndrome ...
https://rarediseases.org/es/organizations/mitochondrial-medicine-society/
Ver perfil >
MLD Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Lysosomal Storage Disorders, Leucodistrofia metacromática, Leucodistrofia ...
https://rarediseases.org/es/organizations/mld-foundation/
Ver perfil >
MND Scotland
Teléfono: 141-945-1077 Correo electrónico: [email protected] Fax: 141-945-2578
Enfermedades raras relacionadas: Esclerosis lateral amiotrófica
https://rarediseases.org/es/organizations/mnd-scotland/
Ver perfil >
Mobility International USA
Teléfono: 541-343-1284 Correo electrónico: [email protected] Fax: 541-343-6812
https://rarediseases.org/es/organizations/mobility-international-usa/
Ver perfil >
Moebius Syndrome Foundation
Miembro NORD
Correo electrónico: [email protected]
Enfermedades raras relacionadas: Moebius Syndrome
https://rarediseases.org/es/organizations/moebius-syndrome-foundation/
Ver perfil >
Monarch Initiative
https://rarediseases.org/es/organizations/monarch-initiative/
Ver perfil >
Montana Advocacy Program
Teléfono: 406-449-2344 Correo electrónico: [email protected] Fax: 406-449-2418
https://rarediseases.org/es/organizations/montana-advocacy-program/
Ver perfil >
Montgomery Heart Foundation for Cardiomyopathy
Teléfono: 402-502-2578 Correo electrónico: [email protected] Fax: 443-287-4109
Enfermedades raras relacionadas: Pediatric Cardiomyopathy
https://rarediseases.org/es/organizations/montgomery-heart-foundation-for-cardiomyopathy/
Ver perfil >
MotherToBaby
Enfermedades raras relacionadas: Síndrome de hidantoína fetal, Síndrome fetal por carbamazepina, Síndrome de retinoide fetal ...
https://rarediseases.org/es/organizations/mothertobaby/
Ver perfil >
Motor Neurone Disease Association
Teléfono: 160-425-0505 Correo electrónico: [email protected]
Enfermedades raras relacionadas: Primary Lateral Sclerosis
https://rarediseases.org/es/organizations/motor-neurone-disease-association/
Ver perfil >
  1. «
  2. 1
  3. ...
  4. 25
  5. 26
  6. 27
  7. 28
  8. 29
  9. 30
  10. 31
  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.