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Empowering Teens with Tools, Info, and Inspiring Stories
       
  Resources - Survivor Issues & Advocacy
       
     
  1. After Cancer Treatment: Heal Faster, Better, Stronger by Julie K. Silver, The Johns Hopkins University Press. (Also available at http://www.amazon.com/)

  2. Association for Cancer Online Resources (ACOR) - The heart of ACOR is a large collection of cancer-related Internet mailing lists, delivering e-mail messages to over 1,847,000 subscribers. In addition to supporting the mailing lists, ACOR develops and hosts state-of-the-art Internet-based knowledge systems that allow the public to find and use credible information relevant to their illness. http://www.acor.org/

  3. Beyond the Cure: Information for survivors of childhood cancer presented by the National Children’s Cancer Society (NCCS). Survivors can build their own late effects assessment (specific to their own diagnosis and treatment), retrieve their personal information, and view common late effects. http://beyondthecure.org/  Phone: 800-5-FAMILY ; survivorship@children-cancer.org

  4. Cancer and Careers - This site is targeted for women with cancer and has some great information about working with cancer-related health problems and understanding your rights as an employee. http://www.cancerandcareers.org/; cancerandcareers@cew.org

  5. Cancer Survivors Online - Provides cancer information, resource, and support to all who request it. http://www.cancersurvivors.org

  6. Cancervive - Provides support, public advocacy, education, and inspirational stories for cancer survivors. http://www.cancervive.org ; cancervivr@aol.com

  7. Childhood Cancer Guides: This information center has been created especially for survivors of childhood cancer and their families.  Web site includes a list of follow-up clinics for childhood cancer survivors, a printable Cancer Patient’s Treatment Record, and provides information on survivorship issues. http://childhoodcancerguides.org/

  8. CureSearch - More children are surviving childhood cancer than ever before. Through the work of dedicated medical professionals as well as their own courageous efforts, former patients are living full lives and providing inspiration and leadership for countless others. Learn about long-term health concerns, follow-up, and insurance issues for childhood cancer survivors. http://curesearch.org/for_patients/  Phone: (800) 458-6223 (CureSearch, Toll Free, U.S. and Canada); info@curesearch.org

  9. Fertile HOPE - This non-profit organization is dedicated to helping cancer patients whose medical treatments present the risk of infertility. http://fertilehope.org/  Phone: 866.965.7205.

  10. LIVESTRONG - An educational program of the Lance Armstrong Foundation (LAF), Live Strong is a resource created to educate survivors and their friends, families and caregivers about cancer survivorship. http://www.livestrong.org

  11. The National Coalition for Cancer Survivorship (NCCS) - NCCS is the only patient-led advocacy organization working on behalf of people with all types of cancer and their families. It is dedicated to assuring quality cancer care for all Americans. http://www.canceradvocacy.org/  Phone: (877) NCCS-YES (877-622-7937); info@canceradvocacy.org

  12. Patient Advocate Foundation - This national non-profit organization serves as an active liaison between the patient and his/her insurer, employer and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to his/her diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment, and preservation of their financial stability. http://www.patientadvocate.org/  Phone: (800) 532-5274; help@patientadvocate.org

  13. Surviving and Moving Forward: The SamFund for Young Adult Survivors of Cancer - The mission of the SamFund is to assist cancer survivors in the United States between the ages of 17 and 35 with their transition into a successful post-treatment life. The SamFund provides financial support by distributing grants and scholarships, as well as offering outreach and information about survivorship. http://www.thesamfund.org/  Phone: (866) 439-9365 ; info@thesamfund.org

  14. SurvivorLink: This website allows survivors of childhood cancer to register and create a SurvivorLink Health Record. This is a place for you to store your Survivor Healthcare Plan (SHP) and any other health documents. By doing so, you won’t have to worry about losing the copy you get from your survivor clinic. Your healthcare provider can view your most recent SHP online so you won’t have to give them a new copy. If you see a new doctor, you can allow them to view your SHP on SurvivorLink so they can quickly learn about your medical history. Visit http://cancersurvivorlink.org/Default.aspx for more details.

  15. The Cancer Survivor's Guide: The Essential Handbook to Life After Cancer by Michael Feuerstein and Patricia Findley. Marlowe & Company, 2006. (Also available at http://www.amazon.com/)

  16. The Children's Cause, Inc. - The Children's Cause is a national advocacy group with a mission of stimulating research and addressing the needs of cancer survivor through education and advocacy. With advice from leading medical, scientific, and public policy experts, the Children's Cause works with policy experts to advance basic and clinical research, healthcare and services for childhood cancer patients, survivors, and their families. http://www.childrenscause.org Phone: 202.336.8374 and 202.336.8375.

  17. Ulman Cancer Foundation for Young Adults - This organization provides support programs, education, and resources, free of charge, to benefit young adults, their families and friends who are affected by cancer. They also promote awareness and prevention of cancer. One of the most important services they provide is the connection of survivors, parents, and other young adults affected by cancer with one another for peer support and information exchange. http://www.ulmanfund.org  Phone: (888) 393-FUND (888-393-3863); info@ulmanfund.org

  18. University of Minnesota - This site deals with the Long-Term Follow-Up Study, coordinated by the University of Minnesota. This is the largest long-term study of childhood cancer survivors ever established! The quarterly newsletters are an excellent source of information. http://ltfu.stjude.org/  Phone: 1-800-775-2167 ; ltfu@stjude.org