From Dana-Farber Cancer Institute
"The Family Connections program is dedicated to supporting adult cancer patients who are parents and their children. Our mission is to offer guidance, information, and resources." Examples of topics: What Children Want to Know, How to Explain Treatment, How to Help Children Cope, and Questions Parents Often Ask.
"A support tool for parents [...] developed by RTI International, Washington University in St. Louis' Health Communication Research Library, StoryCorps, and CommunicateHealth. The advice and suggestions included in this tool were adapted from existing studies and research."
Resources are listed in alphabetical order. Resource descriptions in quotes are taken directly from each Website.
Participation is free and available to patients, family members, and caregivers.Registration is required.
>> Eye Cancer Forum UK
"This forum is primarily aimed at UK [United Kingdom] and European ocular melanoma patients who want to share their experiences and knowledge. All nationalities are welcome but please be aware that this is an English language website."
>> Eye Cancer Network's Patient Forum
"An online community dedicated to eye tumor patients. The Eye Cancer Network's Patient Message Board is now the Patient Forum on Facebook."
>> Melanoma Research Foundation's CURE OM Patient Forum
"A community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment, and from all over the world."
>> Ocular Melanoma Foundation's Patient Forum
"The forum allows patients, their friends and loved ones, and even doctors to interact with each other, share valuable treatment information, and learn more about ocular melanoma in a secure environment."
Participation is free and available to patients, family members, and caregivers. Registration is required.
>> OCU-MEL Listserv
"Created in 2001 for patients and loved ones, doctors, and researchers to exchange information or support via e-mail." [Note: This is similar to a forum, except that the messages are transmitted as e-mail and are, therefore, available only to individuals on the mailing list.]
Participation is free and available to patients.
>> A Cure In Sight
"A Cure In Sight now offers the Cure Companions program to provide the newly diagnosed, or those suffering from disease progression, with a 'veteran' OM companion to be a friend, to offer support, and to help navigate travel and treatment options."
>> Melanoma Research Foundation/CURE OM
"The MRF Phone Buddy program provides newly diagnosed ocular melanoma patients with non-professional, emotional support from someone who has 'been there.' Buddies are a source of encouragement and hope to newly diagnosed individuals."
There are no long-distance charges when using the toll-free phone number in the United States. There are also no charges for the assistance provided on the phone, which is available to patients, family members, and caregivers.
>> Melanoma Research Foundation
"Free telephone helpline to assist melanoma patients and their loved ones. The helpline is staffed by professional oncology social workers who have received specialized training in both melanoma and ocular melanoma. The helpline provides counseling and practical help to those in need. 1-877-673-6460 [toll free], Monday through Thursday, 9 a.m.–7 p.m. and Friday, 9 a.m.–5 p.m. Eastern Standard Time."
>> National Cancer Institute
"The Cancer Information Service is a federally-funded cancer education program. ... Contact us to speak [for free] with a trained information specialist who can answer your cancer-related questions in English and Spanish. 1-800-422-6237 [toll free], Monday through Friday, 8 a.m.–8 p.m. Eastern Standard Time."
Participation is free and available to patients, family members, and caregivers.
>> National Cancer Institute
"By typing, you will have a live conversation with one of our Cancer Information Specialists through the LiveHelp Online Chat Service. They have knowledge of NCI information, publications, websites, as well as other science-based information about cancer and cancer-related resources that can help you. The session is one-on-one only; this service is not a chat room."
https://livehelp.cancer.gov/app/chat/chat_launch (in English, from Monday through Friday, 8 a.m.–11 p.m. Eastern Standard Time)
https://livehelp-es.cancer.gov/app/chat/chat_launch (in Spanish, from Monday through Friday, 10 a.m.–8 p.m. Eastern Standard Time)