Caring for someone with a rare disease can be an around-the-clock commitment, leaving caregivers with little time to attend to their own needs. Forty percent (40%) of rare disease caregivers report having fair or poor emotional or mental health and thirty percent (30%) report having fair or poor physical health.1

However, a caregiver’s well-being is critical for their sake and that of the person they care for. Although caregivers likely realize how important it is to take care of themselves, it may not always feel like something they can do.

Fifty eight percent (58%) of caregivers find it difficult to take care of their own health.1 Below are some resources that can provide tips, information, and support:

Caregiver Action Network created Caring for Rare Disease Caregivers, a resource dedicated exclusively to caregivers of those living with rare diseases. Here you can find tips for coping with various challenges, read personal stories and insights, and interact with other caregivers through an online forum.
National Alliance for Caregiving
National Alliance for Caregiving produced Rare Disease Caregiving in America, a national research study capturing the experiences of more than 1,400 family caregivers of children and adults with a rare disease, condition, or disorder across 400 different diseases.
The National Organization for Rare Disorders
The National Organization for Rare Disorders offers a Rare Caregiver Respite Program, an assistance program designed for caregivers of someone with a rare disorder.

Did you know most rare caregivers reported spending 40+ hours a week caring?1 That’s a full-time job! Here are a few tips for all the rare caregivers out there.

  • Connect with other caregivers. Talking to other people who share similar experiences can be a powerful way to cope with stress and anxiety.
  • Prepare and educate others to care for your child to help you get the breather you need.
  • Find a stress-reducing activity you like and try to make time for it or incorporate it into your routine; exercising, meditating, going for a walk, making art – whatever works best for you.
  • Do what you can to stay well, even if it’s just one small activity a day until it becomes a habit – eat a balanced meal, go to bed early to get enough sleep, or take a few deep calming breaths in a quiet place.
  • Get annual medical check-ups for yourself. It can be easy to focus on your loved one’s medical appointments, but make sure that your calendar also includes visits with your own healthcare team.

Remember, it’s important to take some time for yourself because it can be an important way to de-stress, ultimately helping ensure you recharge your energy and focus.


1. National Alliance for Caregiving. Rare Disease Caregiving in America (February 2018). Retrieved March 23, 2019 from https://www.caregiving.org/wp-content/uploads/2018/02/NAC-RareDiseaseReport_February-2018_WEB.pdf