Resources
For Pediatric Hospice and Palliative Care
The American Cancer Society 1-800-227-2345
http://www.cancer.org/
Statistics and information, treatment options,
survivor network, coping, community-based information.
A Place to Remember 1-800-631-0973
http://www.aplacetoremember.com/
Supportive materials and resources for those
who have been touched by a crisis in pregnancy
or the death of a baby.
Association of Cancer Online
Resources 1-212-226-5525 http://www.acor.org/
Online resources, support and information for
everyone affected
by cancer and related disorders.
Site includes the Pediatric Oncology Resource
Center. www.acor.org/ped-onc/index.html
Babysteps 1-905-707-1030
http://www.babysteps.com/
Not for profit organization dedicated to supporting
bereaved families and raising funds for research
into childhood illnesses and treatments. Helpful
resources, Toronto, Cananda
Bandaids and Blackboards
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides
Supportive information for adults, children
and teachers. Most resources are from a child's
perspective about what it is like living with
medical problems or dealing with grief.
Bereavement Magazine 1-800-60-4HOPE
http://www.bereavementmag.com/
Support network in print six times each year.
Bereaved Parents
http://www.bereavedparents.com/
Forum, chatroom and helpful information and
poems for bereaved parents. Started as a support
network by the parents of a son that died at
the age of three years from a diaphragmatic
hernia.
Batten Disease Support &
Research Association 1-800-448-4570
http://www.bdsra.org/
An international support and research networking
organization for families of children and young
adults with an inherited neurological degenerative
disorder known as Batten Disease.
Beyond Indigo
http://www.death-dying.com/
One of the web's leading sources of information
on grief, grieving, death and dying. Grief support,
products and services for individuals and companies
who assist people who are grieving.
Camp Heaven
maxhaynes.com/pages/campheaven.html
Wonderfully well-done site that can help ill
children or siblings through the transition
from life to death. In a child-friendly, non-threatening
and comforting manner children can playfully
explore a journey through heaven.
Cancer Care 1-800-813-HOPE
(4673) http://www.cancercare.org/
Free help through counseling, education, information,
referrals, financial assistance.
The Cancer Information Service
1-800-422-6237 http://www.nci.nih.gov/
Answers questions on cancer and offers printed
material from the National Cancer Institute.
Research information, statistics, coping, literature
and resources, clinical trials.
Cancer Kids
http://www.cancerkids.org/
Helping children with cancer tell their stories
to the world.
CancerKids.Com
http://www.cancerkids.com/
Fun ways for children to learn about cancer
and information for parents.
Cancer Source Kids
http://www.cancersourcekids.com/
For kids ages 6+ and parents. Information, coping
suggestions, back to school tips, camp and foundation
information.
Candlelighters - Childhood
Cancer Foundation 1-800-366-CCCF
http://www.candlelighters.org/
Strives to educate, suport, serve, and advocate
for families of children with cancer, survivors
of childhood cancer, and the professionals who
care for them.
Chai Lifeline
http://www.chailifeline.org/
An extensive network of free programs and services
designed to help every member of the family
cope during this time of crisis. Counseling
centers in NY and regional offices around the
country and in London and Israel. Especially
servicing the Jewish family.
Children's Cancer Web
www.cancerindex.org/ccw
A quick directory of numerous childhood cancer
resources that includes information, links and
lists of organizations and resources.
Children's Hospice International
1-800-2-4-CHILD http://www.chionline.org/
Resources and support for families from the
time of diagnosis-with hope for cure-through
bereavement of family members if cure is not
attained.
Chemo Angels
http://www.chemoangels.com/
Non-profit volunteer organization dedicated
to brightening the lives of cancer patients.
Very good links. Resources for families dealing
with terminal illness, palliative care and end-of-life
issues: http://www.chemoangels.com/terminal.htm
Children's Illnesses
www.geocities.com/Heartland/Pointe/8529/diseases.htm
Numerous links to various children's illnesses.
Compassionate Friends 1-877-969-0010
http://www.compassionatefriends.org/
Nonprofit, self-help support organization that
offers friendship and understanding to bereaved
parents, grandparents and siblings. There is
no religious affiliation and there are no membership
dues or fees. Local chapters around the USA
and Canada. Online forum/newsletter and annual
conference.
Emily's Rhabdoid Page.
http://home.eol.ca/~sylvest/emily/emily_home.html
Memorial page dedicated to a three year old
who died with a Rhabdoid brain tumor. Very good
links.
Families of Spinal Muscular
Atrophy http://www.fsma.org/
Information on Spinal Muscular Atrophy, Types
I, II, III and IV and Kennedy's Disease. Interactive
areas, local chapters, fundraising activities.
The Front Porch 770-730-5858
http://www.thefrontporch.org/
Support for grieving families in the Atlanta
area. Grief resources and links.
Give Kids the World 1-800998-KIDS
http://www.gktw.org/
Non-profit 51-acre resort for children with
life-threatening illnesses whose one wish is
to visit central Florida's best loved attractions.
GriefNet
http://www.griefnet.org/
An internet community of persons dealing with
grief, death, and major loss. Their companion
site, KIDSAID provides a safe environment for
kids and their parents to find information and
ask questions.
Grief Warehouse
http://www.griefwarehouse.org/
Non-profit warehouse of information for parents
who are coping with the death of their child.
A wonderfully compassionate website dedicated
to education and support for bereaved families.
Growth House, Inc.
http://www.growthhouse.org/
Organization that strives to improve the quality
of compassionate care for people who are dying
through public education and global professional
collaboration. Their search engines give access
to the internet for reviewed resources on life-threatening
illness and end-of-life care.
Health and Medicine Website
Directory http://www.internet-health-directory.com/
A clearinghouse for medical and mental health
information and resources. Very helpful "health
web links".
Heavenly Lights Children's
Memorial http://www.heavenlylights.homestead.com/
Memorial site that validates children's lives
and helps raise awareness about childhood diseases.
Heart Disease 561-620-9799
http://www.heartcenteronline.com/
Defines and answers questions about heart disease.
Heart Encyclopedia 513-636-4432
www.cincinnatichildrens.org/health/heart-encyclopedia/default.htm
Written by a pediatric cardiothoracic surgeon
and his staff of medical professionals. An easy-to-understand,
comprehensive information resource appropriate
for both parents and medical professionals.
The Hope Foundation of Alberta
780-492-1222 www.ualberta.ca/hope
Organization that strives to establish an identity
for hope so that people may intentionally use
hope to enhance quality of life-particularly
in relation to health, learning and the community.
Hoping Skills Company, LLC
1-888-815-HOPE http://www.hopingskillscompany.com/
Meaningful products and compassionate services
that guide inner strength and encourage self-expression.
Exclusive grief-related products and services
designed by a bereaved mother and child life
specialist. On-line resources including serious
illness and grief-related links and bibliographies.
Hospice Net
http://www.hospicenet.org/
Resource center for patients and families facing
life-threatening illness.
International Cancer Research
Portfolio http://www.cancerportfolio.org/
A database of cancer research funded by US and
UK organizations.
Journey Toward Healing
http://www.journeytowardhealing.com/
1-888-858-3752
One Step at a Time journal, keepsake and guide
for coping with a child's hospitalization. The
perfect tool for a parent of a seriously ill
child.
Kidz with Leukemia
http://www.kidzwithleukemia.com/
Interactive CD-Rom to teach children about leukemia,
resources and links.
Kota Press 206-251-6706
www.kotapress.com/FrameLoss.htm
Sensitive, yet comprehensive online loss journals,
art, poetry and links for bereaved parents.
Kristen Ann Carr Fund Forum
http://www.sarcoma.com/
Quarterly newsletter for patients with sarcoma
and their families. Relevant resources and links.
Funding is dedicated to improve all aspects
of a cancer patient's life, and also for research
and treatment of sarcoma with an emphasis on
adolescents and young adults.
Last Acts
http://www.lastacts.org/
A national coalition to improve care and caring
near the end of life. Committees work to improve
knowledge and awareness about end of life issues,
including working together with policymakers
and the news and entertainment media. Includes
a forum for discussion, collaboration and broad
dissemination of new information.
Last Chapters 202-296-8352
http://www.lastchapters.org/
Inspirational stories about people who are facing
death or potentially life-limiting (chronic)
illnesses. Grief resources and coping suggestions.
Let's Connect
http://www.letsconnect.org/
Created by and for young people with serious
& chronic health conditions like cancer,
diabetes, cerebral palsy, and lupus.
Leukemia & Lymphoma
Society 1-800-955-4572 http://www.leukemia.org/
New diagnosis support, disease information,
free materials, answers to questions, support
network and referrals.
Living with Loss Foundation
719-573-4673 www.livingwithloss.org/index.htm
Grief resources for many non-funded community
support groups (e.g. hospice and hospital bereavement
services, funeral home aftercare services, bereavement
care through churches, local support groups
and emergency grief support services) on a need
basis at no cost through the help of donations.
Make-A-Wish 1-800-722-WISH
http://www.wish.org/
The premier wish-granting organization for children,
including Make-A-Wish Foundation International
and Make-A-Wish Foundation local chapters.
Marfan Syndrome 1-800-8-MARFAN
http://www.marfan.org/
National foundation that offers fact sheets,
articles and a directory of support groups.
National Cancer Institute
(NCI) 1-800-4-CANCER http://www.cancer.gov/
Comprehensive cancer database. Includes summaries
on cancer treatment, screening, prevention,
and supportive care, and information on ongoing
clinical trials; fact sheets, news, and other
resources. Documentos sobre el cancer.
National Childhood Cancer
1-800-458-6223 http://www.nccf.org/
Organization that supports the cooperative research
of the Children's Oncology Group (COG) by working
to raise public awareness of childhood cancer.
National Organization of
Rare Disorders 203-744-0100
http://www.rarediseases.org/
A comprehensive database of diseases with related
programs and services.
The Neuroblastoma Children's
Cancer Society 1-800-532-5162
http://www.neuroblastomacancer.org/
Group made up of mostly volunteers who promote
local research in Neuroblastoma to increase
awareness about the disease as well as the need
for additional research and funding- until a
cure can be found.
The Never-Ending Squirrel
Tale www.squirreltales.com/resource.html
Practical tips and encouragement for parents
of kids with cancer. Extremely comprehensive
resource list.
National Hospice and Palliative
Care Organization 1-800-658-8898
http://www.nhpco.org/
Oldest and largest membership organization representing
hospice and palliative care programs and professionals
in the United States. Committed to improving
end-of-life care and expanding access to hospice
care.
Parenting Plus
http://www.parentingplus.net/
1-239-433-1528
Parent education and support for raising children.
Specializing in serious illness and loss related
issues, including divorce and seperation. Phone
support also available.
Pediatric Brain Tumor Foundation
of the United States 1-800-253-6330
http://www.pbtfus.org/
Supports medical research and promotes public
awareness. Provides hope and emotional support-
family support is accessible to patient families
and to the medical and social work community
and the general public: 1-800-253-6530 familysupport@pbtfus.org.
Planet Cancer 512-481-9010
http://www.planetcancer.org/
A place for young adults with cancer to join
together and share insights, explore their fears,
and express their feelings about cancer. "We
don't deny the dark side of illness and death
here, but we also firmly believe that laughter
and light can turn up in the strangest places".
Ronald McDonald House 630-623-7048
http://www.rmhc.com/
The idea behind Ronald McDonald House is to
provide a "home-away-from-home" for families
of seriously ill children who are receiving
treatment at nearby hospitals.
The Sibling Connection
http://www.counselingstlouis.net/
A program started by a psychotherapist whose
thirteen year old sister died of rhabdomyosarcoma.
Website includes information on grief, family
reactions, helpful articles and resources.
Shelly's Place
www-personal.umich.edu/~rvolk/shelly/shelly.html
A site dedicated to Shelly Volk, a seven year
old girl that died because of a diffused pontine
glioma. Links to cancer and brain tumor information
and Web Rings.
Songs of Love 1-800-960-SONG
http://www.songsoflove.org/
A non-profit organization dedicated to creating
personalized songs for chronically and terminally
ill children and young adults.
Surf Side Lemonade Company
http://www.surfsidelemonade.org/
Company founded by a bereaved boy whose sister
died of Marfan Syndrome. Very inspirational
site.
Teens Living with Cancer
585-334-0858 http://www.teenslivingwithcancer.org/
Straight-up information for teens with cancer.
Based on the vision of Melissa's Living Legacy
Foundation-that all teens with cancer should
have opportunities for meaningful, life-affirming
experiences, beginning at diagnosis, continuing
through treatment and remission and, if necessary,
when facing death.
The Touchstone Center for
Grieving Children 208-377-321
www.touchstonecenter.org/index.html
Not for profit 501(c)(3) organization established
to promote and support the special needs of
grieving children and adolescents. Kid pages,
information for parents and grief links
See also our resources for Dealing
with Serious Illness
See also our Resources for Dealing with
Grief and Loss
3-8 Year Olds
9-12 Year Olds
Teenagers
