Other Resources

Rare disease impact more than just the individual with the diagnosis. The needs of the individual and their family frequently go beyond diagnosis and treatment. 

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.

Camp Discovery

For young people with chronic skin conditions, Camp Discovery offers a summer camping experience unlike any they’ve had before. Every year, the American Academy of Dermatology sponsors a week of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun.

Camp Mak-A-Dream

One week can change a lifetime. This is the core belief at Camp Mak-A-Dream. The organization’s mission is to provide a medically supervised, cost-free Montana experience, in an intimate community setting, for children, young adults and families affected by cancer. Retreats are offered for adult cancer survivors, young adults, kids and other groups. For more information, visit their website or call 406.549.5987.

Cancer Support Community

The Cancer Support Community (CSC) is an international nonprofit dedicated to providing support, education and hope to people affected by cancer. Likely the largest employer of psychosocial oncology mental health professionals in the United States, CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone. For more information, visit their website or contact 888.793.9355.

National Association of Hospital Hospitality Houses, Inc.

The National Association of Hospital Hospitality Houses, Inc. is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities. For more information, visit their website or call 800.542.9730.

Joe’s House

Joe’s House is an online nationwide lodging resource for cancer patients and their families who must travel away from home for medical treatment. Their website lists cancer treatment centers and hospitals across the country with nearby lodging facilities that offer a discount.

Hope Lodge

Facing cancer is hard. Having to travel out of town for treatment can make it even harder. Yet the American Cancer Society has a place where cancer patients and their caregivers can find help and hope when home is far away - an American Cancer Society Hope Lodge. Each Hope Lodge offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting well. Hope Lodge provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others. Every Hope Lodge also offers a variety of resources and information about cancer and how best to fight the disease. For more information, visit their website or call 800.227.2345

Office of Dietary Supplements

The mission of the Office of Dietary Supplements (ODS), within the National Institutes of Health, is to strengthen knowledge and understanding of dietary supplements by evaluating scientific information, stimulating and supporting research, disseminating research results, and educating the public to foster an enhanced quality of life and health for the U.S. population. For more information, visit their website or call 301.435.2920.