This site provides information and support for bone marrow donors and patients.
This site “helps patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services.”
FMLA mandates that covered employers must grant eligible employees up to a total of 12 workweeks of unpaid leave during any 12-month period to care for an immediate family member (spouse, child or parent) with a serious health condition.
Phone: 1-800-772-1213
SSI is a federally funded (USA) program that provides monthly payments to disabled children (as well as to disabled adults and to the elderly) if medical and financial eligibility criteria are met. If a child is eligible, he/she automatically qualifies for Medical Assistance (MA) to help pay for medical expenses. You can apply at your local Social Security Administration office, by phone, or online.
Our mission is to end childhood cancer by driving targeted and innovative research. Additionally, we provide educational and coping resources to families affected by children's cancer.
CureSearch for Children's Cancer and the Children's Oncology Group are proud to announce that the Children's Oncology Group's Family Handbook for Children with Cancer, Second Edition, is now available.
The psychosocial section on the COG website (“Coping with Cancer”) provides basic information, assessment tools, simple interventions, and guidance for when and how to seek professional support for emotional, educational, and other psychosocial challenges faced at the time of diagnosis, during and after cancer treatment, and during lifelong follow-up. While the primary audience for this website information is the families of patients, information has also been specially created for community members who frequently interact with cancer patients and their families, such as school professionals, religious leaders, or neighbors. In addition, this website is intended to be a resource for professionals of all disciplines engaged in the diagnosis and management of cancer in children, adolescents, and young adults. This portion of the COG website is the result of efforts of the COG Behavioral Science (BSC), Patient Advisory (PAC), and Nursing Committees who have designed a website section that is easily navigable and will be continuously updated.
Our goal was to produce an evidence-based, online resource of plain language, behavioral/psychosocial information and tools to assist families affected by childhood cancer and their wider community. Utilizing the COG website, staff from the National Childhood Cancer Foundation and experts in childhood cancer from the COG's BSC, PAC, and Nursing committees, we have developed a user -friendly section of the COG website that contains easily navigable information, assessment tools, and descriptions of evidence-based interventions designed to help patients, families, and communities more effectively manage the psychosocial care of children with cancer over the course of the cancer treatment trajectory.
Expected outcome and impact: The availability of evidence-based psychosocial guidance and tools on the COG website will increase awareness of physical, emotional, educational, and psychosocial issues related to cancer and its treatment. The result of this project is that all pediatric cancer patients, their families, and their wider communities will have easily accessible, simple tools to help improve the quality of their life during and after treatment. We hope that the website will provide parents and staff with information about why, when, and how to seek professional help when necessary.
Sections of the psychosocial website include: How will we get through this?, School Support, Community Support, Informed Consent, Grieving and Palliative Care, Meet the Children (with direct links to each section).
The Ability Online Support Network provides a free Internet community for young people with disabilities, parents, and family members to find support through peer interactions.
Provides some of the same services as the US Cancer Society.
Childhood Cancer Foundation Canada provides assistance through a benevolent fund, a support group infrastructure fund, and a national teen network among other services.
ALSF provides a free Treatment Journal; an Answer Center; and The Travel Fund program which provides transportation, lodging and meal accommodations for families traveling to 20 major cancer institutions
Has a national network of employees and volunteers who implement research, education, and patient service programs. Although programs differ according to state and province, some widely available programs are patient-to-patient visitation, transportation to appointments, housing near treatment centers, equipment and supplies, support groups, literature on a large variety of topics, summer camps for children with cancer, research and educational programs.
Free services include a yearly bibliography and resource guide, quarterly newsletter, and various handbooks to help families of children with cancer. The organization provides information and support to children and adolescents with cancer and their families, leadership through advocacy and awareness, and research support leading to a cure.
The ASCO website has oncologist-approved information on more than 120 types of cancer and cancer-related syndromes.
CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.
Caring Bridge is a user-friendly site that allows parents to create a free Web page about their child and keep a virtual diary about their experiences. It can be updated at any time and friends and family can access it from any Web browser.
Chai Lifeline believes that seriously ill children (including children with cancer) need and deserve as happy and normal a childhood as possible. Their programs include: Camp Simcha, professional case management, learning programs, family retreats, insurance support service, wish granting, sibling support, and community services such as volunteer training. Families are invited to contact Chai Lifeline at 1-877-CHAI-LIFE or email info@chailifeline.org for more information.
This guide, developed by the National Cancer Institute, is for parents who have a child with cancer. It has information about childhood cancer, together with tips to help you and your family to cope during this challenging time.
The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. Compassionate Friends is a national organization offering monthly support groups for parents, siblings, and/or grandparents through a network of more than 625 chapters with locations in all 50 states, as well as Washington DC and Puerto Rico. Quarterly newsletter and pamphlets published.
CureSearch for Children’s Cancer funds the Children’s Oncology Group, the world’s largest children’s cancer research collaborative. With more than 210 member hospitals and 6,500 medical professionals, the Children’s Oncology Group provides global expertise and resources for families.
Families of Children with Cancer is run by volunteers who provide education, support, and advocacy to other families that are in treatment, out of treatment, or bereaved.
Friends of Karen’s mission is to provide emotional, financial, and advocacy support for children with life-threatening illnesses and their families, in order to help keep them stable, functioning, and able to cope.
Friends of Karen serves children from birth to 21 years of age who are diagnosed with cancer or any life-threatening illness, U.S. citizen or lawful permanent resident, and who live in the New York metropolitan area. See the Guidelines for Family Assistance page for more details.
Imerman Angels is a federally registered 501(c)(3) not-for-profit organization that provides one-on-one cancer support, connecting cancer fighters, survivors, and caregivers. Imerman Angels partners a person fighting cancer with someone who has beaten the same type of cancer and offers the fighter a unique chance to ask person questions and get support from someone familiar with their experience.
Lotsa Helping Hands allows you to create a free, private, Web-based community to organize family, friends, neighbors and colleagues during times of need. You can coordinate activities and manage volunteers with a group calendar, and communicate and share information using announcements, message board and photos.
MUMS is a national organization that aims to connect parents or caregivers of children with disabilities or health conditions together to form a network of education and support
Lists active treatment protocols for a variety of pediatric malignancies. Has a 22-bed Inpatient unit and extensive outpatient services. Children with newly diagnosed or recurrent malignancies may be eligible for treatments.
The National Children's Cancer Society helps children with cancer and their families by providing financial assistance, advocacy, education, and emotional support.
The National Family Caregivers Association educates, supports, and empowers caregivers of persons with chronic illnesses or disabilities.
This website provides practical tips and encouragement for the parents of kids with cancer.
OncoLink offers a variety of cancer-related information, including articles and writings by patients and their families. The site also has a children’s art gallery.
Starlight Starbrigh thelps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. Not cancer-specific. Good sections for teens
Brain Tumor Information
Email:info@abta.org
The ABTA produces publications about brain tumors, holds patient conferences, offers support by telephone, publishes newsletters three times yearly, and funds research. The web site has information on these services and on brain tumors and their treatment.
Provides patient and family support, publications, quarterly newsletter, and funds for research. On the web site, especially useful is a downloadable PDF file on pediatric brain tumors.
Email: cbtf@childhoodbraintumor.org
Provides information and advocacy for children and families, funds research, and publishes three annual newsletters. The web site has information on tumors, treatment, family support, and a great kid's corner.
Email: info@cbtf.org
Provides support for families and children, resource guides, and funds for research. The web site offers practical information on school issues, hospital stays, and going home, as well as a medical overview of brain cancers.
Email: info@jamescroftshopefoundation.org.au
The Foundation is based in Australia and assists families of children with brain tumors. The web site, begun in 2001, is a good source of information on pediatric brain tumors, including a bibliography of journal articles and clinical trials as well as good descriptions of brain tumors and their treatment.
Provides supportive services for families of children with brain and spinal cord tumors. Offers a variety of services in the New York-New Jersey area including counseling with trained specialists and educational programs. At this time (6/02), the web site doesn't have a lot of information other than contact information for support.
The Pediatric Brain Tumor Foundation of the United States (PBTFUS) seeks to find the cause and cure of brain tumors in children by supporting medical research, increasing public awareness of the disease and aiding in early detection and treatment of childhood brain tumors. Promotes awareness of pediatric brain tumors, provides patient support, internet conferences, and publishes educational materials and a quarterly newsletter, The Helping Hand. Scholarships are available for pediatric brain tumor survivors who wish to extend their education past the high school level.
Provides telephone support, national and regional patient conferences, publications, free quarterly newsletter, caregiver programs, patient support network, support groups, and funds for research. The web site publishes the newsletter (and archives thereof) online, fact sheets, clinical trials, "ask the health professional", and helps for coping, including message boards and support groups. (Not peds specific; located in the San Francisco Bay Area).
Leukemia and Lymphoma Information
This organization provides financial assistance to families (up to $500/year for outpatients), funds research, sponsors a national program in education for the public and the medical community, and publishes a large number of booklets on cancer-related topics.
Mesothelioma Information
Mesothelioma.net provides information and support, including a section on children and young adults with the disease.
Neurofibromatosis (NF) Information
Email: info@ctf.org
The neurofibromatosis (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves. NNFF funds research to find effective treatments and a cure for neurofibromatosis. It provides direct services to children and adults with NF, as well as information and resources to the public and medical professionals.
Rare Disease Information
Email:info@mskcc.org
Provides short descriptions of a variety of rare cancers with links to MSK Cancer Center physicians who treat a particular cancer.
Lists active treatment protocols for a variety of pediatric malignancies. Has a 22-bed inpatient unit and extensive outpatient services. Children with newly diagnosed or recurrent malignancies may be eligible for treatments.
Sarcoma Information
Email: gsi@gistsupport.org
GIST Support International provides news, education, and support for patients affected by gastrointestinal stromal tumor and their families and friends.
Email: http:www.cancer.gov/contact/email-us
This website offers facts, information on the Osteosarcoma Clinical Care & Research Program and ways to support teens and young adults facing the disease.
Email: info@curesarcoma.org
This website offers information and support for patients, informational links, clinical trial listings, and a public forum.
DISCLAIMER - While we tried to include potentially useful resources, this website is not exhaustive. New and additional resources may be available. Please let us know if there is a resource you would like to be included.