Resources for More Information: Pediatric, Adolescents and Young Adults with Cancer
The internet can be a valuable resource for a patient who wants to find out more information about their disease. However, remember that not every website contains accurate and reliable information. The websites listed below offer good information and resources. The following websites and organizations offer support services and opportunities for survivors across the country, but make sure to look for groups local to you as well!
American Association for Cancer Research (AACR)
The Survivor and Patient Advocacy Program creates mutually beneficial and enduring partnerships among cancer survivors, patient advocates, and scientific communities. Membership applications are available for cancer survivors who wish to become survivor advocates.
American Childhood Cancer Organization
The American Childhood Cancer Organization provides information on late effects that survivors may experience as well as support and advocacy information. This is a self-help network for parents of children with cancer. Services include support from other families, reading materials, a quarterly newsletter for parents and professionals, and a newsletter for children.
Association of Pediatric Oncology Social Workers (APOSW)
The Association of Pediatric Oncology Social Workers provides resources regarding what to expect at the end of treatment and beyond. Information includes cognitive late-effects and emotional issues after cancer. The APOSW seeks to connect survivors with social workers if the survivor needs additional supportive services to help cope with the time after cancer treatment.
Bite Me Cancer
Bite Me Cancer is an organization that was started by a 19-year old with thyroid cancer. The group conducts fundraisers and has a teen discussion group on Facebook (no adults allowed).
Camp Make-A-Dream Young Adult Survivors Conference (YASC)
YASC is a six-day, cost-free, medically supervised educational program in Montana designed to address issues of survivorship, provide information about being a cancer survivor, and develop lasting supportive relationships between young adult survivors. They also offer The Head’s Up Conference, designed specifically for young adult survivors of brain tumors. The conferences offer workshops, professional talks, small group discussions with other participants, and recreational activities like hiking, swimming, working in an art studio, and soaking in the hot tub.
Children’s Oncology Group
The Children’s Oncology Group provides guidelines and recommendations about long-term follow-up for cancer survivors. There is information available about different diagnoses, possible side effects from treatment, co-occurring conditions, finances, late effects, and emotional issues.
Critical Mass: Young Adult Cancer Alliance
Critical Mass is a community-powered advocacy organization on a mission to transform the care and treatment of young adults with cancer. Their website has many resources for young adults.
Stupid Cancer is a national, survivor-led advocacy, support and research organization that works on behalf of young adult survivors of cancer under age 40. They use music, arts and media to encourage survivors to talk openly about cancer. Services offered include: a radio show, scholarship information and free educational workshops on fertility, legal, and social issues. They also hold a large annual conference, the OMG! Cancer Summit for Young Adults.
Schooling, Employment & Insurance
There are many resources to help survivors, but it can take some homework to find what you need. In dealing with schooling and employment issues, you should learn about your rights and your school/employer's responsibilities under the law.
If you are attending college it is important to register with the Office of Disabilities at your school should any issues related to your cancer therapy arise or for help with management of chronic health conditions while in school.
Provides a comprehensive website, free publications, and a series of support groups and educational seminars for employees with cancer.
Provides financial support and education for young adult survivors of cancer.
The Cancer Legal Resource Center
Program run by the Disability Rights Legal Center and Loyola Law School. The CLRC has a national, toll-free line (1-866-THE-CLRC) that provides callers from around the country with confidential, free information and resources for their situation.
Ulman Cancer Fund Young Adults with Cancer
A leading voice in the young adult cancer movement, we are working at a grassroots level to support, educate, connect and empower young adult cancer survivors.
Financial Aid for Students Affected by Cancer on OncoLink
Other Useful Resources
Individuals with Disabilities Education Act Amendments of 1997 (IDEA) (www.ed.gov/offices/OSERS/Policy/IDEA/index.html)
This policy describes requirements for a least restrictive environment in which individuals with disabilities can receive education. Children with disabilities must have access to and participate in the general curriculum. The law strengthened the rights of parents to be involved in decision making and made an outcome-based approach mandatory. State and local agencies are encouraged to work together toward system-wide changes that link student progress with school improvement.
The Rehabilitation Act of 1973(Public Law 93-112): Section 504
This law requires all programs and activities that receive federal funding (for example, public high schools, public universities, government jobs) to accommodate individuals with physical or cognitive impairment(s). Examples include that public schools must make appropriate accommodations for students who use wheelchairs, and employees with disabilities must be given access to assistive technology if needed.
Adult survivors of childhood cancer may find that finding appropriate insurance is difficult for them. The Affordable Care Act (ACA) may have useful resources for survivors. In particular the ACA ensured that (1) young adult can stay on their parents plans until age 26 (2) Insurance companies are not allowed to deny coverage because of pre-existing conditions and (3) No more annual or lifetime limits. Some useful resources about the insurance and the ACA can be found via: