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resources

Featured Guides

Featured Guides

The Office of Rare Diseases Research offers several guides to provide you with tips for finding information, services, and resources.

  • English Guides
  • Spanish Guides
See Featured Guides

Rare Diseases Resources

Rare Diseases Resources

A collection of resources on topics of interest to the rare disease community, including rare disease social networks, online medical reference Web sites, rare disease events, and more.

  • Basic Information
  • In-depth Information
  • Rare Disease Networks
See Rare Diseases Resources

Genetics Resources

Genetics Resources

A collection of resources that provide information on genes, genomics, and genetic conditions, including family health history tools, a glossary of genetic terms, and more.

  • Basic Information
  • In-depth Information
  • Cancer Genetics
  • Professional Associations
See Genetics Resources

Genetic Testing and Treatment

Genetic Testing and Treatment

Explore this section to learn more about genetic testing, treatments for rare diseases, and tools for finding genetic specialists.

  • Genetic Testing Information
  • Locations for Healthcare and Services
  • Orphan Products
  • Newborn Screening
See Genetic Testing and Treatment

Support for Patients and Families

Support for Patients and Families

Explore this section for support and advocacy organizations that can help you share your story, connect with others, find knowledgeable healthcare professionals, locate financial assistance, or get involved in research and awareness activities.

  • Patient Advocacy Groups in the United States
  • Patient Advocacy Groups Outside the United States
  • Financial Aid
  • Travel and Lodging Assistance
  • Disability Resources
  • Evaluating Health Information
See Support for Patients and Families

Recursos en Español

Recursos en Español

En esta sección brindamos información sobre organizaciones y grupos de soporte que le pueden poner el contacto con otras personas afectadas y que ofrecen enlaces en la red que le ayudaran a localizar profesionales de la salud y clínicas especializados, laboratorios de genética y oportunidades de investigación.

  • Enfermedades
  • Guías de información
  • Recursos generales
  • Organizaciones
  • Servicios de asistencia médica
  • Investigaciones
See Recursos en Español

Teaching Resources

Teaching Resources

A collection of resources for educators to help students of all ages learn about rare diseases and genetic concepts.

  • From the NIH
  • For Healthcare Professionals
  • Additional Teaching Resources
See Teaching Resources

Locate healthcare providers and researchers who have knowledge of your condition.

Navigate the process of trying to obtain a diagnosis.