Learn about clinical trials and research opportunities in Diagnosis/Treatment section
Learn about clinical trials and research opportunities in Diagnosis/Treatment section
You are not alone ...
On this page, patients and their loved ones will find several types of ocular melanoma support services enabling direct communication, and all have no costs to participate:
"A Cure In Sight 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."
Live podcasts provide informal interviews and conversations with one or more OM patients (or with other OM resources) for "sharing information and insights on treatment, research, and living with ocular melanoma."
"Imerman Angels provides peer-to-peer support services to melanoma patients and caregivers. We invite you to register to be matched with a Mentor Angel or to volunteer to be a Mentor Angel. The process of receiving a match takes just a few days."
"Patient True Talk, a patient-to-patient registry, makes matches based on diagnosis and treatment parameters as well as geographical location. Patients and caregivers then have the ability to send secure messages directly to those whom are willing to share their experience."
These Zoom meetings are provided at no charge to all patients diagnosed with any type of ocular melanoma. (Note: Zoom information is shown at very bottom of linked page.) Every Tuesday of each month, 7 p.m. Eastern Standard Time.
"Provides virtual support to individuals diagnosed with primary and metastatic ocular melanoma. These groups are held [at no charge] via a virtual platform so that individuals from across the country can join either by phone or online." First Wednesday of each month, 1 – 2 p.m. Eastern Standard Time.
"The Cancer Support Community is here to help you by offering free support and coaching for cancer patients or their loved ones by phone and online. The Helpline is staffed by community navigators, resource specialists, and a Helpline navigator. [...] We provide help with coping in over 200 languages." 1-888-793-9355 [toll-free], Monday through Friday, 9 a.m. – 8 p.m and Saturday 9 a.m. – 5 p.m.. Eastern Standard Time. Both phone support and one-on-one online chats are available during these hours.
"This [free] decision-support counseling program can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer. In a brief 1-hour session [at a select CSC affiliate location or by phone], an Open to Options Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you."
"Information specialists at NCI's contact center are available to help answer your cancer-related questions whether you are a patient, family member or friend, health care provider, or researcher. We provide accurate, up-to-date, and reliable information that is easy to understand and free of charge." 1-800-422-6237 [toll free], Monday through Friday 9 a.m. – 9 p.m. Eastern Standard Time. Both phone support and one-on-one online chats are available during these hours. (This service is also available in Spanish.)
"Our team includes a specialized physician assistant to help you navigate through the entire spectrum of care. Our melanoma medical expert can provide accurate answers to a wide range of melanoma questions on a confidential basis. [...] AIM’s physician assistant will call or email you back (your preference) within 48 business hours." [Note: Includes ocular melanoma. See their webpage for types of non-urgent questions that can be addressed. Your message can be delivered through their online form or by phone.]
"Do you have a specific, more medically-based question? If so, you can submit your question to the Melanoma Research Foundation's nurse. [...] You can expect a personalized answer from our experienced nurse within 72 hours." [Note: Includes ocular melanoma.]
Online discussion forum
"The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in." Information on joining is available at this link.
Online discussion forum
"Confidential patient resource and social network." Information on joining is available at this link.
Listserv (discussion through email)
Private: Only members can send/receive emails. Messages are routed through the listserv address so personal email addresses are never shown. Information on joining is available at this link.
[Note: This group is for patients and family members.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is also for family members.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is also for patients.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This is "an OM men's group only."]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is for patients with metastatic OM and their family members.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is for patients.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is for patients, spouses, or their immediate support person.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is for patients and family members.]
Support group on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: This group is for ocular melanoma patients, family members, and caregivers. It is an English/French bilingual support group.]
Support groups on Facebook
"Private: Only members can see who's in the group and what they post." Information on joining is available at this link.
[Note: OcuMel UK, based in England, offers the following online support groups: "Patient Support," "Family Support," "Bereaved Support," "Knowledge and Strategy," "Welfare Support," and "Scottish Members."]
New information added to this webpage: July 10, 2022
Links to all external sites re-verified on this webpage: June 13, 2022
Email: Erica@EyeMelanoma.org
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