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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.

Peer Support

Connect one-on-one with other rare caregivers through our peer support program. Discover our peer support training:

Self-Care Tips

You can’t pour from an empty cup. Download resources to support your self-care and gain wellness tips from Give an Hour

Mental Health Care Providers

Mental health providers sign up to learn about supporting rare caregiving and offer individual counseling services when needed. Join Now

Mapping the Journey

Identifying key mental health and emotional wellness touchpoints along the Hypoxic-Ischemic Encephalopathy caregiving journey

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. 

Give an Hour addresses the unmet and/or disconnected mental health and emotional wellbeing needs of the rare disease caregiver community by listening, educating and providing services. The grant spans over one year with a completion of deliverables by December 2022. 

Supporting Organizations

Founded in 2005, Give an Hour is a national nonprofit that specializes in mental health, emotional wellness, and has taken the steps to join the area of rare caregiving.  Through peer support and provider training GAH will help build a sustainable support system for rare caregivers. This program will be offered nationwide, where trained providers and peers are located.

To find out if local support is offered in your area please contact schapman@giveanhour.org.

 

The following NO COST services are available:

  • The opportunity for those serving the rare caregiver community to collaborate in how to best serve the unique needs of this population 

  • An online mental health and emotional wellness resource library 

  • Ongoing Peer Support:  Initially, peer support will be available online using a web based platform. Facetoface support will be offered based on peer support availability/comfort level

  • An Evidence Based Peer Support Model that will provide training to rare caregivers who are interested in becoming a peer supporter in the project 

  • Referrals for mental health services 

To ensure that the services offered meet rare caregiver needs, we need to hear from you!  Take 5 minutes to access our online needs assessment.
5 Min Assessment

  Self-compassion is simply giving the same kindness to ourselves that we would give to others.

~Christopher Germer