Erdheim-Chester Disease Global Alliance

Caregiver Resources

Caregivers in the rare disease community face some exceptional hurdles. You may even have faced the special challenge of having to be the one to educate your medical providers and others about Erdheim-Chester disease. So you need information, education, and tools that can help you manage the many daunting tasks you face as you care for your loved one. The sources below will direct you to organizations that offer assistance and/or information that may help.

To connect with others caring for loved ones with ECD, join our virtual chats for caregivers. Register for the next meeting here.

Advocacy and Support

The Caregiver Action Network (CAN) is a 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 is a nonprofit organization providing education, peer support, and resources to family caregivers and serves a broad spectrum of family caregivers and care situations.

Family Caregiver Alliance This organization provides a public voice for caregivers, offering assistance through education, services, research, and advocacy.

Empowering Caregivers This site provides a safe, nurturing site for all caregivers with emotional and spiritual support and a vast amount of both online and offline resources for caregivers.

The Invisible Disabilities Association (IDA) encourages, educates, and connects people and organizations touched by illness, pain, and disability around the globe. IDA also offers resources for information about various illnesses, help with costs of medications, disability benefits, and more.

HealingWell.com features a thriving support community, blog, videos, a newsletter, articles, and resources to help patients actively manage the challenges of living with chronic illness.

The Academy of Nutrition and Dietetics (formerly the American Dietetic Association) provides accurate information and various resources about nutrition, wellness, and related areas.

American Nutrition Association The American Nutrition Association promotes optimal health through nutrition and wellness education. Educating both laypeople and professionals about the health benefits of nutrition and wellness, it focuses on science-based nutrition.

Caregiver Articles

Information	Website
Create a custom caregiver guide specific to your current needs as a caregiver.	https://www.helpforcancercaregivers.org/
Offers consulting services and educational content with a message to empower caregivers to prepare to care.	http://www.caregivingclub.com/
A visual Education Center for Family Caregivers	http://www.videocaregiving.org/caregiving.php
Tool box of resources for caregivers	http://caregiveraction.org/resources/toolbox/
Caregiver’s Guide to Understanding Dementia Behaviors	https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors
Checklists and information to help the caregiver	http://www.agis.com/caregiverkit/caregiverkit.pdf
Six Things Seniors Can Do To Improve Memory	https://www.psychologytoday.com/blog/memory-medic/201011/six-things-seniors-can-do-improve-memory
Preparing Your Home for a Loved One with Alzheimer’s: A Caregiver’s Guide	https://www.redfin.com/blog/2016/09/preparing-your-home-for-a-loved-one-with-alzheimers-a-caregivers-guide.html
Caregivers Coping with Chronic Illness from the National Dysautonomia Research Foundation	http://www.ndrf.org/Caregiving.htm
Website that provides a tool for family, friends, neighbors, and colleagues to organize activities during times of need.	http://www.lotsahelpinghands.com/
General information regarding caregivers or carers.	http://en.wikipedia.org/wiki/Caregiver
Caregiving: A Universal Occupation – Caring for Adults with Cognitive and Memory Impairments	http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392
Personal growth and self-help website	http://www.healyourlife.com/wisdom
A national consumer and community engagement initiative to improve care at the end of life.	http://www.caringinfo.org
10 Easy Ways Seniors Can Boost Their Mental Health and Well-Being	http://www.everydayhealth.com/news/easy-ways-seniors-can-boost-mental-health-well-being/
Eating for Your Brain as a Senior	http://health.usnews.com/health-news/health-wellness/articles/2016-01-05/eating-for-your-brain-as-a-senior
Mourning A Parent or Spouse’s Death	https://www.agingcare.com/articles/mourning-spouse-s-death-133316.htm
Promoting Mental Health at Home: How to Design the Perfect Meditation Room	http://www.homeadvisor.com/r/meditation-room/#.WXJN3ojyuM8

Caregiver Blogs

Description of Blog	Website
Caregiver to a chronically ill husband writes about her experiences	http://spousalcare.blogspot.com

ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes. The patient brochure is available to help new members of the community understand the basics of ECD. The medical brochure is available to share with your care team or any medical professional. Request a free copy by filling out this form.

Request a Brochure

If you know of other resources that should be listed, please contact us.

Last updated: April 6, 2021