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Pediatric Psycho-Oncology Professionals

Information for Parents

CureSearch for Children's Cancer: Children's Oncology Group (COG)

Groups & Organizations that Provide Information, Support and/or Financial Assistance

Legal and Other Financial Assistance

Groups by Cancer Type

Leukemia and Lymphoma

Neurofibromatosis (NF)

Brain Tumors

Rare Diseases

Sarcomas

Transplant Information

CureSearch for Children's Cancer: Children's Oncology Group (COG)

CureSearch for Children's Cancer: Children's Oncology Group (COG)

Children's Oncology Group (COG)

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: Click here to download the handbook

Coping with Cancer

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).

Groups & Organizations that Provide Information, Support and/or Financial Assistance

Canada

Ability Online Support Network
http://www.abilityonline.org
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.

Canadian Cancer Society
565 W. 10th Avenue
Vancouver, BC Canada V5Z 4J4
(888) 939-3333 or (604) 872-4400
http://www.bc.cancer.ca/
Provides some of same services as the US Cancer Society.

Childhood Cancer Foundation Canada
National Office
55 Eglinton Avenue E, Suite 401
Toronto, ON Canada M4P 1G8
(800) 363-1062 (Canada only)
(416) 489-6440
http://www.candlelighters.ca
Childhood Cancer Foundation Canada provides assistance through a benevolent fund, a support group infrastructure fund, and a national teen network among other services.

United States

Alex's Lemonade Stand (ALSF)
Alex's Lemonade Stand Foundation
333 E. Lancaster Ave., #414
Wynnewood, PA 19096
(866) 333-1213
www.alexslemonade.org
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

American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) ACS-2345
http://www.cancer.org
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.

American Childhood Cancer Organization (previously Candlelighters Childhood Cancer Foundation)
PO Box 498
Kensington, MD 20895-0498
(800) 366-CCCF
http://www.candlelighters.org
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.

American Society of Clinical Oncology (ASCO)
www.cancer.net
The ASCO website has oncologist-approved information on more than 120 types of cancer and cancer-related syndromes.

Association of Cancer Online Resources
www.acor.org/ped-onc
ACOR offers information and e-support groups to patients, caregivers, or anyone looking for answers and support related to cancer. The ACOR website has descriptions of diseases and treatments with links to information. Additionally, ACOR hosts pediatric discussion groups.

CancerCare
www.cancercare.org
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.

CareSearch
http://www.curesearch.org/index.aspx
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.

Caring Bridge
www.caringbridge.org
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
www.chailifeline.org
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.

Childhood Cancer Ombudsman Program
P.O. Box 595
Burgess, VA 22432
Fax: (804) 580-2502
Email: gpmonaco@rivnet.net
This free service helps children with cancer and their families who are experiencing difficulties in gaining access to appropriate education, medical care, healthcare cost coverage, and meaningful employment. Services include medical library searches, a second opinion program, and help resolving problems with insurance or discrimination.

Children's Cancer Society Inc.
Children's Cancer Society Inc.
765 Mountain Ave. Suite 368
Springfield, NJ 07081
(908) 301-9717
Children's Cancer Society
"Our mission is to provide financial support to families that have a child with cancer and the costs of the cancer treatments are causing financial difficulties. If your family is having financial difficulties do to a cancer illness, we maybe able to help. We can run special fundraising programs for you and try to raise money to help you."

Compassionate Friends
http://www.compassionatefriends.org
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.

Families of Children with Cancer
http://www.fcco.org
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
118 Titicus Road
P.O. Box 190
Purdys, NY 10578
914-277-4547
Email: info@friendsofkaren.org
Web: http://www.friendsofkaren.org/
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. Please see the Guidelines page for more details: http://www.friendsofkaren.org/guidelines-for-family-assistance

GriefNet
www.griefnet.org
A large site for parents and children whcih specializes in email support groups where peers provide support while also being monitored by a trained therapist and psychiatrist.

Imerman Angels
www.imermanangels.org
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
www.lotsahelpinghands.org
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 National Parent-to-Parent Network
Julie J. Gordon
150 Cluster Court
Green Bay, WI 54301-1243
http://www.netnet.net/mums
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

National Cancer Institute, Pediatric Oncology Branch, NIH
http://pediatrics.cancer.gov/
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.

http://pediatrics.cancer.gov/

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.

http://pediatrics.cancer.gov/

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.

http://pediatrics.cancer.gov/

http://pediatrics.cancer.gov/www.lotsahelpinghands.org
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.www.lotsahelpinghands.org
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.

http://pediatrics.cancer.gov/

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.

http://pediatrics.cancer.gov/

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.

National Children's Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
(314) 241.1600 (telephone) or 1-800-FAMILY
(314) 241.6949 (fax)
http://www.children-cancer.com/
The National Children's Cancer Society helps children with cancer and their families by providing financial assistance, advocacy, education, and emotional support.

National Family Caregivers Association
www.nfcacares.org
The National Family Caregivers Association educates, supports, and empowers caregivers of persons with chronic illnesses or disabilities.

NYU Cancer Institute: Straight Talk to Kids (How to Talk to Your Children about Cancer)
http://cancer.med.nyu.edu/patients/patient-care/supportive-services/straight-talk-kids

The Never-Ending Squirrel Tale
www.squirreltales.com
This website provides practical tips and encouragement for the parents of kids with cancer.

The Wellness Community (Gilda’s Club)
www.gildasclub.org

Mission: “To develop strategies and lead activities that will enable our worldwide group of independent affiliates to become the premier emotional and social support community for people with cancer and their families and friends. To nurture affiliate network growth and serve as a unifying voice and catalyst to ensure program effectiveness, a quality brand image and the highest standard of operation wherever Gilda's Clubs exist.”

Onco Link
www.oncolink.org
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 Starbright
www.starlight.org
Starlight Starbrighthelps 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 (see Starlight Starbright on the teens page.)

Legal and Other Financial Assistance

Family and Medical Leave Act (FMLA)
www.dol.gov/whd.fmla/index.htm
FMLA mandates that covered employers must grant eligible employees up to a total of 12 work weeks of unpaid leave during any 12-month period to care for an immediate family member (spouse, child or parent) with a serious health condition.

Scholarship Information

Visit Ped-Onc Resource Center

Supplemental Security Income (SSI)
www.ssa.gov
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.

Groups by Cancer Type

Leukemia and Lymphoma

Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605
(914) 949-5213 or 1-800-955-4LSA
http://www.leukemia.org
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.

Neurofibromatosis (NF)

National Neurofibromatosis Foundation
Children's Tumor Foundation
95 Pine Street, 16th Floor
New York, NY 10005-4002
(212) 344-6633Toll Free: 1-800-323-7938
http://www.ctf.org/
The neurofibromatoses (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.

Brain Tumors

American Brain Tumor Association
Email: info@abta.org
(800) 886-2282
http://www.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.

Brain Tumor Foundation of Canada
620 Colborne St., Suite 301
London, Ontario, Canada N6B 3R9
519-642-7755 Cross-Canada Toll Free 1-800-265-5106
http://www.braintumour.ca/
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.

Childhood Brain Tumor Foundation
CBTF, 20312 Watkins Meadow Drive, Germantown, Maryland 20876
(301) 515-2900 Toll Free: (877) 217-4166
E-mail: cbtf@childhoodbraintumor.org
http://www.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.

Children’s Brain Tumor Foundation
274 Madison Avenue Suite 1004
New York, NY 10016
Toll Free: (866) 228-4673
http://www.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.

James Croft Hope Foundation
P.O. Box 112
Innaloo WA 6918
Email: info@jamescroftshopefoundation.org.au
http://www.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.

Making Headway Foundation, Inc.
115 King Street
Chappaqua, NY 10514-3460
(914) 238-8384
http://www.makingheadway.org/
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.

Pediatric Brain Tumor Foundation of the United States
302 Ridgefield Court
Asheville, NC 28806
(800) 253-6530
http://www.pbtfus.org/
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.

The National Brain Tumor Society
East Coast Office
124 Watertown Street, Suite 2D, Watertown, MA 02472
(617) 924 9997
West Coast Office
22 Battery Street, Suite 612, San Francisco, CA 94111-5520
(415) 834 9970 Toll-free: (800) 770 8287
Patient Services: (800) 934 2873
Email: info@braintumor.org
http://www.braintumor.org/
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.)

Rare Diseases

Memorial Sloan-Kettering Rare Cancer Page
Email: info@mskcc.org
http://www.mskcc.org
Provides short descriptions of a variety of rare cancers with links to MSK Cancer Center physicians who treat a particular cancer.

National Cancer Institute, Pediatric Oncology Branch, NIH
http://pediatrics.cancer.gov/
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.

Sarcomas

GIST Support International
http://www.gistsupport.org
GIST Support International provides news, education, and support for patients affected by gastrointestinal stromal tumor and their families and friends.

Osteosarcoma Online
Email: osteosarcoma@iucc.iu.edu
http://www.cancer.gov/cancertopics/pdq/treatment/osteosarcoma/patient
This website offers facts, information on the Osteosarcoma Clinical Care & Research Program and ways to support teens and young adults facing the disease.

Sarcoma Foundation of America
http://www.curesarcoma.org
This website offers information and support for patients, informational links, clinical trial listings, and a public forum.

Transplant Information

National Bone Marrow Donor Program
http://www.marrow.org
This site provides information and support for bone marrow donors and patients.

National Bone Marrow Transplant Link
http://www.nbmtlink.org/
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.”

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.

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This Page Last Reviewed on April 9, 2013

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