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Support Groups
Links to a wide variety of Online Support Groups
Association of Cancer Online Resources (ACOR) An ACOR “Mailing List” is a free, non-moderated discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. Messages are “posted” by someone on the list (i.e., a member of the support group) and cover a wide range of topics, e.g., patient experiences, research articles, clinical trials, current treatment practices and alternative treatments. A posting often results in an “online discussion” of the topic. Sometimes, one or more medical professionals are members of a support group and may comment on a posting. [Some websites provide an online discussion mechanism, called a “forum”, that is similar to message posting systems. One website offering a forum is the TAAASPS site, discussed below.] There are currently seven ACOR lists dealing with sarcoma: KAPOSI, L-M-SARCOMA (leiomyosarcoma), L-SARCOMA (liposarcoma), E-SARCOMA (Ewing’s Sarcoma), SARCOMA, RHABDO-KIDS (rhabdomyosarcoma), and OSTEO-SARCOMA (osteosarcoma). You should definitely give serious consideration to joining one of these or the many other ACOR support groups if you are either a patient or a caregiver. They provide you with a network of friends who are often dealing with some of the very issues you are. Click here to see the entire set of ACOR lists. An interesting history of ACOR can be found in an interview with its president, Gilles Frydman.
A CancerSource.com “Message Board” is a free discussion mechanism for patients, caregivers, researchers, and medical professionals to exchange messages with each other. “Moderated” means that when a message is posted, it will not immediately appear in the list of messages. Instead, a “moderator” will review the message before making it publicly available. Just as with the ACRO “mailing lists” discussed about, posted messages provide a forum where you can ask questions, talk, listen, and share your ideas and concerns. Currently there are two sarcoma-related CancerSource.com message boards: Kaposi’s Sarcoma and Soft Tissue Sarcoma. Click here to see the complete list of CancerSource.com message boards.
Cancer Reunited provides online forums for your type of cancer, within which you can meet others fighting the same disease, share your experiences and discuss established and trial treatments. The current forums for sarcomas are: Ewing’s sarcoma, gastro intestinal stromal tumor, Kaposi sarcoma, leiomyosarcoma, liposarcoma, osteosarcoma, rhabdomyosarcoma, and synovial sarcoma. If a forum does not exist for your sarcoma, the administrator of the site (a liposarcoma patient) will create one for you.
CancerTogether is a non-profit organization of patients, families, volunteers and healthcare professionals committed to the task of developing a video library chronicling the human experience with cancer and making it available on-demand from the Internet. Stories told by patients and their families provide a compelling source of emotional support, comfort and education. CancerTogether believes that immediate access to such stories, from the moment of diagnosis through treatment and beyond, will provide a vital and much needed element of the healing process.
The group, which is one the Yahoo!HealthGroups discussed below, is private, and the messages are not publicly seen on the internet. It is open to Chondrosarcoma patients, their family, friends, or caretakers, and Medical Professionals with an interest in chondrosarcoma. When someone first signs up to join the group, membership is not automatically approved until contact information is supplied to the Group Moderator
Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It provides an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with such problems as transportation to and from frequent chemotherapy appointments, grocery shopping or meal preparation/delivery, and all the other tasks necessary for life to run smoothly during a crisis. A “coordinator” makes a list of what is needed, and adds the name and email address of each person who is interested in helping. Anyone can be a coordinator, but it's usually a close friend or family member of someone undergoing medical treatment or experiencing some other crisis. The Lotsa Helping Hands system takes over from there. Members are automatically notified by email about the site and the needs that have been listed. They can see the group calendar, and volunteer for whatever fits their own situation. Volunteers receive automatic confirmations and reminders of their commitments. Lotsa Helping Hands also provides summary views of commitments as well as unassigned events, eliminating redundant assistance, missed commitments, and excessive administrative labor. The system maintains the privacy of its members and is free.
msn.Groups provide a number of resources in additional to messaging. The Rhabdo kids group on msn.Groups is focused on rhabdomyosarcoma.
The Alliance Against Alveolar Soft Part Sarcoma (TAAASPS) The TAAASPS website was developed to communicate information about the very rare type of cancer called Alveolar Soft Part Sarcoma (ASPS or ASP-sarcoma). The TAAASPS website contains information about a charitable foundation that was formed to promote advocacy and research to benefit patients with alveolar soft part sarcoma. Among other things the site contains a discussion of Treatment Options and supports a Discussion Forum.
There are several Yahoo!HealthGroups lists that are focused on sarcoma. These groups function like the ACOR mailing lists and the CancerSource.com message boards. Among tho health groups that you might consider joining are: Chondrosarcoma, E-SARCOMA-UK, Endometrialstromalsarcoma (endometrial stromal sarcoma), Ewing's Sarcoma, ewingssarcoma, Malignant Fibrous Histiocytoma (MFH). and Mesenchymal Chondrosarcoma.
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