Special Online Resources for Support and Information
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.
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.
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.
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.
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.
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.
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. The group publishes a monthly newsletter which can be downloaded from the site.
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.
Dean Gallea's site on Multiple Myeloma Survivors Stories
Stories of Multiple Myeloma Survivors. This site is dedicated to the memmory of June Brazil, one of the original listowners of the MYELOMA list.
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.
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.
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.
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.
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.
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.
The CLL Foundation - hosted by ACOR
The mission of the CLL Foundation is to raise money for research that will lead to a better understanding of the disease and to better treatments for those who have been diagnosed with the disease. That money primarily comes from individuals who believe that CLL research is important and deserves increased funding.
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
The International Myeloma Foundation
The IMF is here to help everyone battling multiple myeloma (patients, families, friends, caregivers and the medical community.
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.
Professional Organizations Sites
- AOSW: Association of Oncology Social Work - hosted by ACOR
This Web site is designed 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.