Rare diseases or conditions are those that affect fewer than 200,000 people. It is estimated that 25 to 30 million Americans currently have a rare disease or condition. Rare disease has a broad and lasting impact on caregivers, in both daily life and long-term mental health and well-being. Give an Hour is partnering to uncovering innovative ways to provide rare caregivers with accessible and understandable resources to support them on their journey.
Specifically, Rare Caregivers are able to join peer support groups and also train to become a peer supporter when they are in a place where they can give back. Mental health education and tools are also provided. This creates a sustainable support system for rare caregivers in conjunction with traditional mental health care.
Mental Health Services for Rare Caregivers
Give an Hour was awarded the Rare Belonging Grant from the Alexion Charitable Foundation to aid Give an Hour in mapping the journey of rare caregivers in relation to their mental health and wellbeing. Check Out Alexion’s 2020-2023 Community Impact Report for more details about Give an Hour’s work with this community.
Supporting Organizations
and the Global Genes Allies in Rare Disease
