Family/Care Partner Support

Everyone needs someone to lean on, including those who are known for their strength. From someone to talk to, to organizations that teach, support, and offer family & care partner assistance, these resources provide connections for people of all ages.

Facebook Live Interview: Sue McCann, MSN, RN, DNC

November 2017 - Sue McCann, MSN, RN, DNC joined Susan Thornton, CEO of the Cutaneous Lymphoma Foundation for a CLF Facebook Live event to discuss care giving and quality of life best practices. Sue is a Programmatic Nurse Specialist at the University of Pittsburgh Medical Center.

Caregiving in Cutaneous Lymphoma: A Pilot Study to Explore the Concepts

Assisting in the care of a person diagnosed with a chronic illness presents many challenges. A pilot study looks at the impact of caregiving on the caregiver.

Caring Bridge

CaringBridge is a nonprofit organization offering free personalized websites to those wishing to stay in touch with family and friends during significant life events. Their mission is “to bring together a global community of care powered by the love of family and friends in an easy, accessible and private way.” CaringBridge authors can quickly and easily create personalize websites that display journal entries and photographs. Well-wishers visit the site to read updates and leave messages in the Guestbook. For more information, visit their website or call 651.452.7940.

Caregiver Action Network

The Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. For more information, call 202-772-5050 or visit their website.

Family Caregiver Alliance

The Family Caregiver Alliance (FCA) is the first community-based nonprofit organization started in the United States to address the needs of families and friends providing long-term care at home. Long-recognized as a pioneer in health services, FCA now offers programs at national, state and local levels to support and sustain caregivers. For more information, visit their website or call 800.445.8106.

National Alliance for Caregiving

Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance is dedicated to improving quality of life for families and their care recipients through research, innovation, and advocacy.

Well Spouse Association

The Well Spouse Association, a nonprofit membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. The organization offers peer to peer support and educates health care professionals and the general public about the special challenges and unique issues “well” spouses face every day. For more information, visit their website or call 800.838.0879.

Online Support Groups

Online support communities such as listservs can directly link people living with cutaneous lymphoma to one another via email. The Cutaneous Lymphoma Foundation is pleased to promote the following listservs.