Caregiver Action Network

“The Caregiver Community Action Network (CCAN) is a unique and highly dedicated group of over 100 volunteers in more than 40 states. Our CCAN volunteers reach out to family caregivers to provide education and support. They also teach caregivers to be advocates for themselves and their loved ones. “  You can join for free and get some much needed support! http://caregiveraction.org

They also have a web site dedicated to rare disease caregiving: http://www.rarecaregivers.org/

 

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Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are key to helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage our fast growing organization.

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PIONEER, Idera clinical trial for dermatomyositis

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