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Most recently updated on July 24, 2012
Libby A. Klein, LCSW
View Outline from Elizabeth Klein - 2004
The Mountain You Have Climbed. National Children’s Cancer Society. 2003. Available free of charge at 800-532-6459
A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors. Children’s Brain Tumor Foundation. 2004. Available free of charge at 866-228-4673
Childhood Cancer Survivors: A Practical Guide to Your Future. By Nancy Keene, Wendy Hobbie, and Kathy Ruccione. 2000 O’Reilly & Associates, Inc. Sebastopol, CA.
Childhood Cancer Survivorship: Improving Care and Quality of Life, 2003. IOM Report on Survivorship www.iom.edu
Working It Out: Your Employment Rights As a Cancer Survivor, by Barbara Hoffman, J.D. Pamphlet published by the National Coalition for Cancer Survivorship (NCCS), 1999. Can be ordered by phone or on the web: Toll Free 877-622-7937 or www.canceradvocacy.org.
A Cancer Survivor’s Almanac: Charting Your Journey. 2003. National Coalition of Cancer Survivorship; Edited by Barbara Hoffman, J.D. Chronimed Publishing, Minneapolis, MN.
National Children’s Cancer Society offers a comprehensive website filled with information, support, and critical resources. A guidebook called Climb Every Mountain is available free for patients and caregivers.
Provides information critical for education advocacy online. Legal Rights: A Family Guide is available to families.
The National Coalition for Cancer Survivorship offers A Cancer Survivor’s Almanac and Working It Out: Your Employment Rights as
a Cancer Survivor
Offers a Parent-to-Parent Network that links trained parent volunteers to parents looking for information and support around issues faced by children with brain or spinal cord tumors. A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors is available free for patients and caregivers.
www.acor.org (the Association of Cancer On-line Resources, Inc.)
A listserv where one can talk with others about survivorship issues; click on “mailing lists,” then on the particular listserv you want, e.g. 4YOUth (12-21 year olds); Ped.-Onc; LT-Surv (long term survivors); BMT-Talk (Bone Marrow Transplant). There are many others.
This website was started by a young adult survivor and has a listserv for survivors to be able to speak to one another. It tends to focus on survivorship from the adolescent and young adult perspective.
This website also has a listserv and was started by a young adult survivor. The website has other resources as well, such as college scholarships.
This website was created specifically for teens to be able to communicate with each other about cancer treatment and survivorship issues. Click on “talk back” to access the listserv part.
This website is for the organization Surviving and Moving Forward: The SAM Fund for Young Adult Survivors of Cancer, and provides grants to young adult survivors who need help with some of the costs associated with ending treatment and trying to launch one’s independent living status.
National Information Center for Children and Youth with Disabilities
National Center for Learning Disabilities
Federation for Children with Special Needs
Job Accommodations Network (JAN)
This organization provides information about the American with Disabilities Act and how employers can accommodate people with disabilities. They can provide the name that the Vocational Rehabilitation Dept. is called in any state since the names change from state to state. 800-526-7234
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