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Special Online Resources for Support and Information
Page last updated on: Apr.19.2009
ACOR offers information and support through its integrated sytem of online discussion groups.
To further its mission, ACOR creates specific websites and also hosts a growing number of websites, created by:
- Patients for patients and caregivers.
many of those websites are considered to be clearly among the best sites for a particular disease or condition.
- Cancer Advocacy Organizations, many of which were created dircetly from the membership of an ACOR mailing list.
- Professional Organizations.
ACOR volunteers have also created a growing number of disease specific websites.
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Special ACOR Websites
Cancer-Pain
An ACOR Site
This site was created to help cancer patients receive the pain treatment they deserve.
It contains information about cancer pain, its causes and available treatments as well
as links to online groups.
Oncochat.org
hosted by ACOR
OncoChat is a real-time global support community for
people whose lives have been touched by cancer. Oncochat doesn't offer
medical advice or professional counseling. Oncochat does offer
lots of hugs and understanding from people who share similar
experiences and emotions.
Not all of the people who visit us are cancer patients.
Some are relatives, some are caretakers and some are just
friends of someone who has cancer. The chat is not always topical.
Sometimes the talk is about politics, religion, our families and
life in general..
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Websites that cover multiple topics & Guides
Steve Dunn's Cancerguide
hosted by ACOR
Created and maintained through the efforts of a cancer survivor,
CancerGuide has links to a variety of cancer information resources and
offers advice about using the information retrieved.
The site is dedicated to helping you find the answers to
your questions about cancer, and especially to helping you find the
questions you need to ask. The ultimate goal is to show you how to
improve your odds by researching your options.
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Patty Feist's Ped Onc site
hosted by ACOR
Created and maintained through the efforts of a parent,
the Pediatric Oncology Resource Center is the place for parents, friends,
and families of children who have or had childhood cancer. This site was
created by and for people who know young people who are recovering from
cancer. The site maintainers gather resources, Web links, and references
and store all the available information and tidbits of knowledge.
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Liddy Shriver Sarcoma Initiative
The Liddy Shriver Sarcoma Initiative publishes the Electronic
Sarcoma Update Newsletter (ESUN), a peer-reviewed bi-monthly online
publication for sarcoma patients, caregivers, survivors, oncologists,
nurses and other members of the medical team.
It is actively involved in the funding of sarcoma research grants
internationally in a wide variety of sarcomas.
Its website contains a wealth of information about sarcomas and is accessed tens of
thousands of times monthly.
The "Getting Started" link on the Welcome page (www.SarcomaHelp.org) provides an
overview of the resources that are available.
Additionally, it organizes and coordinates the Team Sarcoma Initiative
which is an internationally coordinated set of events to raise awareness
of sarcoma and raise funds to support sarcoma research, clinical trials,
and patient and family services. The Team Sarcoma Initiative is an
"International Sarcoma Awareness Week" that occurs in July.
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Disease Specific Sites
The Sarcoma Alliance
The Sarcoma Alliance (www.sarcomaalliance.org) mission is the education, support, and guidance of people affected by sarcoma. To that end, the Sarcoma Alliance provides information on sarcomas and on obtaining appropriate treatment; lists medical centers and doctors specializing in sarcomas; maintains a bulletin board where people can exchange information; manages a Peer-to-Peer program that links people with similar diagnoses for one-on-one support; lists and assists local sarcoma support groups; and hosts regular chats. Because sarcomas are relatively rare and very diverse cancers and proper diagnosis and treatment is critical to outcome, one of the Sarcoma Alliance's most important programs is Hand-in-Hand, which encourages second opinions from sarcoma experts by providing grants to reimburse expenses. Sarcoma is a disease of young and old alike, and thus outreach to younger sarcoma patients is facilitated by our Facebook group. The Sarcoma Alliance also raises sarcoma awareness by sponsoring Made Me Nuclear (www.mademenuclear.com), an operetta about one osteosarcoma survivor's cancer journey, and raises funds for support and informational programs particularly through two major events: Ocean of Hope and Spirit of Survival..
Cathy's EC Cafe
A patient oriented site devoted to esophageal cancer, the EC Cafe
contains information gathered by esophageal cancer patients and
non-medical caregivers. The purpose is to help others that are coping
with esophageal cancer, possibly for the first time, to gain insight
into this disease..
Leiomyosarcoma is a Rare Cancer
hosted by ACOR
Extensive medical information of all levels, both for patients and
doctors, written/compiled by a doctor and a group of informed patients & caregivers.
This site was created to educate about the effective treatment decisions for this rare type of cancer.
The Liferaft Group
A patient oriented site devoted to GastroIntestinal Stromal Tumor (GIST). The Life Raft Group (LRG) provides support, through information, education, and innovative research to patients with GIST.
Alexandra Andrews' Cancerlinks
hosted by ACOR
CancerLinks' mission is to provide complete access to information
about cancer for patients, medical providers and any one in need.
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GrannyBarb & Art Flatau's Leukemia Links
hosted by ACOR
GrannyBarb & Art Flatau's Leukemia Links is a guide to Internet accessible information about all types of leukemia.
The site is maintained by 2 cancer patients.
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Dean Gallea's site on Multiple Myeloma Survivors Stories
hosted by ACOR
Stories of Multiple Myeloma Survivors. This site is dedicated to the memmory of June Brazil, one of the original listowners of the MYELOMA list.
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The CMPD Foundation Information Website
hosted by ACOR
CMPD Mission is to advance research, knowledge aboutmyeloproliferative diseases, develop new drugs for FDA approval, improve quality of life and care of mpd patients,
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Wendy Sheridan's Bladder Cancer WebCafe
Bladder Cancer WebCafe is an online community for bladder cancer patients
and those who care for them. It covers treatment options, chemoprevention guidelines, survivor stories,
a support group, and more.
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The Pancreatic Duct
This site is intended to function as a credible conduit for learning about
pancreatic cancer, to help patients and their loved ones better understand
what is happening so as to more effectively participate with their care team.
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Pancreatica - - Confronting Pancreatic Cancer
Provides a wealth of information about pancreatic
cancer, as well as access to the world's largest listing of clinical trials
against pancreatic cancer.
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Doug Bank's Testicular Cancer Resource Center
hosted by ACOR
The Testicular Cancer Resource Center is a charitable organization devoted
to helping people understand testicular and extragonadal germ cell tumors.
Specifically, it provides accurate and timely information about these tumors
and their treatment to anyone and everyone interested. The site has information
for patients, caregivers, family, friends, and physicians.
The site maintainers rely on the support of some of the finest doctors in the field.
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Life Raft Group's GIST Site
The Life Raft Group is a unique online community for GIST patients
and those who care for them.
The group publishes a monthly newsletter which can be downloaded from the site.
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Karen Parle's Lungcanceronline Site
Lung Cancer Online is a gateway to lung cancer resources for the benefit
of people with lung cancer and their families. It is intended to facilitate the
time consuming and often frustrating process of learning about lung cancer,
treatment options and support services.
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Advocacy Organizations Sites
Colon Cancer Alliance
hosted by ACOR
The Colon Cancer Alliance is an organization of colon and rectal cancer survivors,
caregivers, people with a genetic predisposition to the disease, and other
individuals touched by colorectal cancer. Colorectal cancer is the second
leading cancer killer in the United States. The Colon Cancer Alliance is
committed to ending the suffering caused by cancers of the colon, rectum,
appendix and anus.
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The CLL Foundation
hosted by ACOR
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The Cutaneous Lymphoma Foundation
The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy
organization dedicated to helping patients with Mycosis Fungoides, Sezary
Syndrome and other forms of Cutaneous T-cell Lymphomas by:
- Promoting Education
- Advancing Patient Care
- Facilitating Research
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The International Myeloma Foundation
The IMF is here to help everyone battling multiple myeloma (patients, families, friends, caregivers and the medical community.
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Carcinoid Foundation
This Web site includes a review of carcinoid disease written for the layperson,
information on carcinoid cancer support groups and upcoming professional conferences,
abstracts from peer-reviewed publications, and links to related Web sites.
The Carcinoid Cancer Foundation is a not-for-profit organization.
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Professional Organizations Sites
AOSW: Association of Oncology Social Work
hosted by ACOR
This Web site isdesigned as a resource to learn more about Oncology social work and the organization.
Oncology social work is the primary professional discipline providing
psychosocial services to patients, families and caregivers facing the
impact of cancer diagnosis and treatment. The organization's members practice
in hospitals, outpatient clinics, home care agencies, hospice programs,
community wellness programs, and other settings. They utilize research
findings to direct their psychosocial and behavioral interventions. They
connect patients and families with essential community, national, and
international resources.
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