What is
sPECial?
Sarcoma and PEComa Investigation and Action Leadership is committed to research, education, advocacy, and support for those diagnosed with sarcoma cancer.
Resources
A goal of our organization is to provide education and direction to the patient newly diagnosed with rare sarcoma. We hope you find the information below useful.
MEDICAL & RARE CANCER SITES
Amschwand Sarcoma Cancer Foundation (www.sarcomacancer.org)
Association of Cancer Online Resource (www.acor.org) A free lifeline for everyone affected by cancer and related disorders. Access to 159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders. Notification system for events, support groups, research.
Cancer.Net (www.cancer.net) Sponsored by American Society of Clinical Oncology.
Connective Tissue Oncology Society (www.ctos.org) The leading society for research and collaboration between international sarcoma centers.
Dana-Farber Cancer Institute (www.dana-farber.org)
e-patients.net (e-patients.net) Discussions and information regarding "e-patients" - individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.
Jennifer Hunter Yates Sarcoma Foundation (http://jenniferhunteryatessarcomafoundation.org)
Kristen Ann Carr Fund (www.sarcoma.com)
LAM Treatment Alliance (www.lamtreatmentalliance.org)
Liddy Shriver Sarcoma Inititative (www.sarcomahelp.org)
National Comprehensive Cancer Network (www.nccn.org)
Pubmed (www.ncbi.nlm.nih.gov/pubmed) PubMed is a service of the U.S. National Library of Medicine that includes over 17 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.
Rare Cancer Alliance (www.rare-cancer.org) Purpose is to disseminate information and provide support to all pediatric (childhood) and adult rare cancer patients.
Rarer Cancers Forum (www.rarercancers.org.uk) International/global connection for all rarer cancers; includes blogs and news.
Rein In Sarcoma (www.reininsarcoma.org) Karen Wyckoff Foundation
Sarcoma Alliance (www.sarcomaalliance.org)
Sarcoma Foundation of America (www.curesarcoma.org)
Sarcoma.net (www.sarcoma.net) Dr. George Demetri's site.
Sarcoma UK (www.sarcoma-uk.org) UK Sarcoma and rare cancer site.
UpToDate (www.uptodate.com) Subscription electronic information resource. Get specific, detailed answers to clinical questions.
The following sites could provide information about clinical trials
Center Watch (www.centerwatch.com)
Coalition of Cancer Cooperative Groups (www.cancertrialshelp.org)
eCancerTrials (www.ecancertrials.com)
EmergingMed (www.emergingmed.com)
National Cancer Institute (www.cancer.gov/clinicaltrials)
ARTICLES
"Managing a Rare Cancer Diagnosis" By Phyllis A. Domm, with Ashley and Chris Laub, published in Women & Cancer. You can also read the PDF version on our site.
"What is a Cure?" Paths of Progress, Fall/Winter 2008. Copyright, Dana-Farber Cancer Institute. Included here with their permission.
OTHER