Caregiver Support and Information Links

Family caregivers provide vital care management, transportation services, social support, socialization, advocacy, medical treatment, therapies, and services for their CYSHCN that can impact overall health and quality of life. Support for caregivers is extremely important because physical, mental, and emotional health and wellbeing of the family caregiver can impact how they provide care and thus the physical, mental, and emotional health and wellbeing of the CYSHCN.

The Minnesota Leadership Education in Neurodevelopmental Disabilities (LEND) program developed a fact sheet describing the need to support family caregivers as they take care of children with special health care needs. It presents facts, needs, and solutions related to supporting family caregivers presented from the perspective of a caregiver. Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers. Many disease advocacy organizations also provide support, education and information for caregivers, such as, the Alpha-1 Caregivers Virtual Support Group. As summer comes to a close, think about support as an important part of healthy living.

This information is shared from the Genetic Alliance organization. Click the following  link if you would like to subscribe to their online mailing list for updates about their useful programs and websites.