The needs of patients, families and caregivers are vast. To be successfully addressed, they require a community of dedicated individuals and programs. We have prepared a list of resources and family support services offered by other organizations for your reference.
- The Alliance for Childhood Cancer is comprised of more than 20 national patient advocacy groups, professionals and medical and scientific organizations that assist children with cancer. The PBTF is a founding member of the ACC.
- Camp Make-A-Dream offers cost free programs to children, teens, young adults and women with cancer. It also serves children whose sibling or parent has cancer.
- Camp Sunshine offers a retreat to children with life-threatening illnesses and their families.
- Healing Hearts Camp offers a retreat for families and grief activities to provide emotional support.
- Clinicaltrials.gov is a registry and results database of clinical trials in all 50 states and in 185 countries.
- The National Cancer Institute provides information on how to find and pay for clinical trials, as well as research updates for patients and researchers.
In addition to the PBTF’s Galaxy Scholarship program, these resources are also available to brain tumor survivors and their families:
- Beyond the Cure, a program of the National Children’s Cancer Society, provides scholarships to childhood cancer survivors who have demonstrated the ability to overcome the challenges of cancer.
- Cancer for College gives scholarships to cancer survivors who are enrolled in an accredited college.
- FinAid offers many scholarship resources to families affected by cancer.
- SuperSibs provides college scholarships to siblings of cancer patients. Applicants must be able to articulate how cancer has affected them and how they plan to make a difference in the future.
- The American Childhood Cancer Organization is dedicated to improving the lives of children with cancer and their families.
- The National Dissemination Center for Children with Disabilities provides information of children with disabilities.
- The National Parent Technical Assistance Center Network provides parent centers with innovative technical assistance, current information and educational resources and materials.
- The PACER Center (Parent Advocacy Coalition for Educational Rights) expands opportunities and enhances the quality of life of children and young adults with disabilities and their families.
- Wrightslaw provides information about special education law, education law and advocacy for children with disabilities.
Financial Aid and Insurance
- The American Cancer Society offers information on financial issues, sources for help and health insurance management.
- CancerCare offers financial assistance for cancer-related costs, including transportation, home care and child care. They also make referrals to other organizations that offer financial support.
- Family Voices gives families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families and serve as a trusted resource for health.
- The National Children’s Cancer Society offers financial aid for nonmedical needs. Applications are made with the hospital social worker. The NCCS also provides helpful links on health insurance and other legal issues.
- The National Health Law Program protects and advances the health rights of low income and underserved individuals.
- The Patient Advocate Foundation helps patients with access to care, medical debt and job retention due to their illness.
- Supplemental Security Income (SSI) is a federal income program designed to help disabled people with little or no income pay for clothes, food and shelter.
- UnitedHealthcare Children’s Foundation provides families with financial assistance to help gain access to medically related services that are not covered, or fully covered, by the available insurance plan, and have the potential to enhance the children’s clinical condition.
- Cancervive provides information and helpful links on living with cancer and life after cancer.
- The National Cancer Institute’s online dictionary explains the meaning of cancer-related words and medications.
Grief and Loss
- CancerCare offers online and telephone support groups for caregivers and family members of brain tumor patients.
- The Compassionate Friends network provides support to families after a child dies.
- The Hospice Foundation of America offers information on end-of-life care to professionals, patients and families.
- The Solace Tree gives emotional support to grieving children, teens and families.
- Cancer.net gives survivors information about life after treatment.
- The National Cancer Institute’s office of Cancer Survivorship Research provides resources on survivorship issues. They are dedicated to the quality of life of survivors by addressing their unique needs.
- Children’s Oncology Group provides long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancer.
- Angel Flight America arranges free travel for any legitimate, charitable or medically related need. They primarily serve patients to and from the heartland region.
- CancerCare offers financial assistance for transportation related to medical needs.
- Corporate Angel Network offers free travel to treatment centers across the country to cancer patients.
- Lifeline Pilots provides free air transportation for financially distressed passengers with medical and humanitarian needs.
- The National Patient Travel Center is a helpline that provides information and referrals to all available sources of transportation help.
- CancerCare offers support groups and counseling face to face (in Connecticut, New Jersey and New York), over the phone and online.
- CaringBridge is an online space where families can connect and receive support and hope.
- The International Brain Tumour Alliance brings together support, advocacy and information groups for brain tumor patients and caregivers in different countries. It also includes researchers, scientists, clinicians and allied health professionals.
- The Locks of Love Foundation provides hairpieces to financially disadvantaged children suffering from long-term medical hair loss.
- The Make-A-Wish Foundation grants wishes to children with life-threatening medical conditions.
- SuperSibs serves siblings of children with cancer and their parents. It also offers a college scholarship program.