IN CLOSING

Not everyone’s raregiver journey is the same. But we do believe that there is a common baseline of chronic caregiving stress and landmark events during the journey that most raregivers share, regardless of their loved one’s rare disease. That is why we have created the Raregivers™ Emotional Journey Map.  

Practicing holistic, person-centered self-care as a caregiver, patient or professional in rare disease can help to avoid depression and other mental health issues. The National Alliance on Mental Illness provides mental health education and access to resources, such as support groups and information about evidence-based psychological therapies including Cognitive Behavioral Therapy and Acceptance and Commitment Therapy. 

This Raregivers™ Emotional Journey Map is for raregivers, patients, professionals, and other individuals and organizations involved in supporting raregivers in rare disease. A rare  life is a long, life-altering journey that is characterized by cycles of grief and hope. To find more information about holistic, person-centered pathways and support resources please visit Raregivers™ Coalition Global Mental Health & Wellness Program for Rare Disease.