Caregiver Resources

If you are caring for a person with a rare disease, you know dedication, time, and patience are required. You also know that practicing self-care is a critical part of caregiving. We are here with educational and financial resources to support your efforts.

NORD Caregiver Respite

  • Offers up to $500 annually to secure respite caregiving support
  • Covers care from a registered or licensed practical nurse, a certified nursing assistant, or home health aide
  • Disbursed throughout the calendar year or used in a single award
  • Granted on a first-come, first-served process through a simple qualifying process, guided by a NORD patient services representative

Learn More

NORD Resource Center

  • Provides you with free webinars, fact sheets, infographics and other helpful materials
  • Includes free educational videos that cover a variety of topics that affect the rare disease community. For a full list of videos, please visit our YouTube channel playlist here
  • Invites you to attend free, interactive webinars on a variety of topics like self-advocacy, health insurance, care coordination, specialty pharmacies, and getting involved. Interested in being alerted as to when our next webinar will be? Sign up for alerts here. For a full list of past webinars, please visit our YouTube channel playlist here

NORD Rare Disease Database

  • Provides reports on rare diseases
  • Written in patient-friendly language
  • Links to disease-specific patient organizations and other resources that provide further support for patients and their families
  • Click here to visit