Other Links

Sarcoma
Sarcoma – Full texts of all articles from this journal devoted to sarcoma are available at: http://www.hindawi.com/journals/srcm/contents.html

 

Patient Registry Program

The Sarcoma Foundation of America (SFA) is managing a Sarcoma Patient Registry Program.  The Registry records the significant events of the history and treatment of patients diagnosed with Sarcoma.  The Registry is a data collection and reporting system hosted by Registry Partners and managed by SFA.

The Registry’s endeavor is to collect, store, analyze and interpret data on persons with sarcoma.  SFA invites you to participate in its efforts to make the Sarcoma Patient Registry information as accurate and comprehensive as possible.  By contributing, your data will be a valuable resource for oncologist and researchers conducting clinical trials and medical studies.  Most of all, you will be helping to improve the care of current and future sarcoma patients.

You are eligible to join the Registry if you have been diagnosed with ANY sarcoma subtype.
If you have any questions or would like to join the Sarcoma Patient Registry, please send an email to sfa@registrypartners.com with your contact information and the most convenient time and method to contact you, or you can call toll free at (866) 501-6780

Resources

American Cancer Society
http://www.cancer.org

ASCO – Sarcoma specific information: Click Here

People Living With Cancer – A patient website from the Amercian Society of Clinical Oncology (ASCO)
http://www.cancer.net/

The Brain Tumor Society
http://www.tbts.org

Cancer 411 – Cancer Information and Resources
http://www.cancer411.org

Cancer Information Network
http://www.cancernetwork.com

CancerNet: PDQ – NCI’s Comprehensive Cancer Database
http://www.cancer.gov/cancertopics/pdq/cancerdatabase

The Doctors Doctor – Interpret Pathology Reports (for a fee)
http://www.thedoctorsdoctor.com/f_home.html

Steve Dunn’s Cancer Guide – Patient Perspective
http://cancerguide.org

Healthline – Cancer Channel
http://www.healthline.com/channel/cancer.html

InteliHealth – Comprehensive Health Information
http://www.intelihealth.com

National Comprehensive Cancer Network – Website specifically for patients
http://www.nccn.com/

Nature Reviews Websites
http://www.nature.com/nrc/info/info_links.html

Oncolink – Cancer Information for Professionals and Lay Persons
http://www.oncolink.org

Patient Power – Web based radio shows with discussion about various aspects of sarcoma care and diagnosis
http://www.patientpower.info/listenhealthtopiclist.asp?Topic=Sarcoma

Bone Cancers

The Center for Orthopedic Oncology and Musculoskeletal Research
http://www.sarcoma.org/main.php?page=lss

Amputee Coalition of America
http://www.amputee-coalition.org/

Hemipelvectomy and Hip-Disarticulation Amputee Support and Information Site
http://www.hphdhelp.org

Limb Preservation Foundation- Denver, CO
http://www.limbpreservation.org

Booklets

Cancer Care – Sarcoma Treatment Update (a booklet)
http://www.cancercare.org/pdf/booklets/ccc_sarcoma.pdf

National Cancer Institute – Sarcoma Progress Review Group 2004
(a roadmap for organization of sarcoma treatment and research)
http://planning.cancer.gov/library/2004sarcoma.pdf

Disability

Americans with Disabilities Act – Questions & Answers
http://www.usdoj.gov/crt/ada/qandaeng.htm

Social Security – Disability Programs
http://www.ssa.gov/disability/

Drug Information

ACS Cancer Reference Info, click on Cancer Drug Guide
http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/index

Access to Unapproved Drugs
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/ucm176098.htm

American Cancer Society’s List of Information about Cancer Drugs
http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/index

American Society of Health System Pharmacists
http://www.ashp.org

The Medicine Program – Accessing Free Medication
http://www.themedicineprogram.com

Needy Meds – Drug Assistance
http://www.needymeds.com

Rx List – The Internet Drug Index
http://www.rxlist.com

Journals

Neurology Journals from The Lancet

Oncology Journals from The Lancet

Pain Management

American Pain Society
http://www.ampainsoc.org

Medscape Oncology Pain Learning Center
http://www.medscape.org/resource/pain/cme

National Comprehensive Cancer Network Pain Guidelines -
These guidelines for physicians require registration and are free to everyone.
http://www.nccn.org/professionals/physician_gls/pdf/pain.pdf

Pain Management Resource
http://www.partnersagainstpain.com

World of Information on Pain
http://www.pain.com

Radiation Therapies

Cancernet’s Radiation Therapy and You
http://www.cancer.gov/cancerinfo/radiation-therapy-and-you

Staten Island, NY University Hospital – Radiation Oncology
http://www.siuh.edu/Clinical-Services/Radiation-Oncology.aspx

Fermi National Accelerator Laboratory – Neutron Beam Radiation
http://adwww.fnal.gov/www/ntf/ntf_home.html

Loma Linda, CA, University Medical Center – Proton Beam Radiotherapy
http://www.protons.com/index.html

National Association for Proton Therapy
http://www.proton-therapy.org

San Diego Gamma Knife Center
http://www.sdgkc.com

Research

AACR – American Association for Cancer Research
http://www.aacr.org

CancerProtocol.com
http://www.cancerprotocol.com

Connective Tissue Oncology Society
www.ctos.org

Developing Cancer Therapies
http://ctep.cancer.gov/

Office of Rare Diseases
http://rarediseases.info.nih.gov

On-line Science and Medical Dictionaries
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html

Pub Med – Free Searches of US National Library of Medicine
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

Quackwatch – Guide to Health Fraud
http://www.quackwatch.com

Sarcoma Alliance for Research through Collaboration
http://www.sarctrials.org

Side Effects

Great Comebacks – Information on bowel problems and ostomies http://www.greatcomebacks.com

Other Resources

Cancer Care – Counseling, Education and Comprehensive Resource Guide
http://www.cancercare.org

Cancer Supportive Care Program – Comprehensive Coping Guide
http://www.cancersupportivecare.com

Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills
http://www.canceradvocacy.org/toolbox/

Fatigue
http://www.cancerfatigue.org

Look Good… Feel Better – Free Service for Women and Teens with Cancer
http://lookgoodfeelbetter.org

National Cancer Institute – Coping with Cancer
http://www.cancer.gov/cancerinfo/coping

National Coalition for Cancer Survivorship – Advocacy
http://www.canceradvocacy.org

National Lymphedema Network
http://www.lymphnet.org

Oncology.com – Living with Cancer
http://www.oncology.com

Vital Options International – Telesupport Cancer Network and Radio Program
http://www.vitaloptions.org

Cancer Support Community – Free Professional Support Services
http://cancersupportcommunity.org/

Miscellaneous

National Institute’s of Health Chemotherapy and You
http://www.cancer.gov/cancerinfo/chemotherapy-and-you

NCI – Understanding Cancer Series Angiogenesis
http://www.cancer.gov/cancertopics/understandingcancer/angiogenesis/AllPages