Caregiving for a person with a rare disease is a collective journey fraught with many hurdles. The diagnosis can unleash a storm of emotions. Not to mention the cycle of appointments and treatments that disrupt life's rhythm. This reality can be invasive even for the strongest bonds.
Maintaining your well-being is important as you navigate rare disease caregiving. We’ve created a list of resources for you to lean on.
Mental Health Resources for Caregivers of Rare Disease Patients
High rates of depressive symptoms and mental health problems tend to exist among caregivers. Compounded with the physical strain of caring for someone with a rare disease, these challenges can be overwhelming. However, you are not alone. Here are a few mental health resources to consider, offering the support and guidance you need.
- Angel Aid, a nonprofit, provides mental health and wellness services to rare disease diagnosed families. They accomplish this through psychosocial training, retreats, and a multilingual caregiver network.
- Headspace, Calm, and Aura help you care for your mind. These, along with other mental health apps provide techniques to improve sleep or manage anxiety.
- RareGuru connects caregivers, parents, and patients with similar rare diseases or symptoms.
- Crisis helplines offer immediate support. Crisis Text Line offers confidential, 24/7 support via texting.
Support Groups, Retreats, and Conferences
A support group or social network is an excellent resource for caregivers of rare disease patients. Caregiver networks can reduce depression, anxiety, and stress. Having a network to lean on can help you to provide care longer, studies show. Here are a few options to consider.
- Genetic and Rare Diseases Information Center (GARD) connects caregivers with information and resources. GARD shares rare disease information and resources, helps families navigate the diagnosis, and connects patients with disease experts or clinical studies.
- Center for Chronic Illness provides support groups and educative events.
- Rare Disease Day is a global event focused on rare diseases. This event happens every year on February 28 (or February 29 in leap years). Events are held worldwide. Find an event near you.
Books, Webinars, and Websites
Caregivers of people with rare diseases face emotional and physical challenges. Books, webinars, or websites provide resources you can use whether waiting for an appointment or during a short respite.
- The National Organization for Rare Disorders (NORD) is an advocacy organization for patients and families affected by rare diseases. Their resource center offers free rare disease webinars and other helpful materials. NORD also has a searchable database that makes finding others navigating rare diseases easy.
- Self-Care for Caregivers: A Practical Guide to Caring for You While You Care for Your Loved One by Susanne White. Self-care is vital to maintaining stamina and a positive outlook. This short, easy-to-read guide offers ways to replenish your mind, body, and spirit.
- Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving by Allison J. Applebaum, PhD, who shares more than a decade of clinical and research experience. This book also shares insight about her personal journey with rare disease caregiving.
No matter where you’re headed next or what you’re faced with as a caregiver of a rare disease patient, just know you’re not alone in this journey.
