Ocular Melanoma Patient Resources

The 2025 hybrid Eyes on a Cure: Ocular Melanoma Patient & Caregiver Symposium was held April 25-27 in Cleveland, OH, MA. Click below to view recordings from past symposia:

• View recordings from the 2025 Patient & Caregiver Symposium
• View recordings from the 2024 Patient & Caregiver Symposium
• View recordings from the 2023 Patient & Caregiver Symposium
• View recordings from the 2022 Patient & Caregiver Symposium
• View recordings from the 2021 Patient & Caregiver Symposium
• View recordings from the 2020 Patient & Caregiver Symposium
• View recordings and slides from the 2019 Patient & Caregiver Symposium
• View recordings and slides from the 2018 Patient & Caregiver Symposium
• View recordings and slides from the 2017 Patient & Caregiver Symposium

Use the Treatment Center Finder to explore ocular melanoma treatment centers. Please note, this is not a doctor recommendation list, simply a list of OM specialists to get you started. The Eye Cancer Network also provides a list of specialists in the US and more than 50 countries around the world.

The MRF’s Clinical Trial Finder will help you understand which emerging ocular melanoma treatments may be an option for you. Clinical trials offer OM patients the opportunity to receive care that may not yet be the standard.

Visit the MRF Youtube page to view more than two dozen webinars covering issues of importance to ocular melanoma patients and caregivers. Be sure to check back often, as new learning resources are added throughout the year!

Eye on OM is the Melanoma Research Foundation’s quarterly newsletter dedicated to the ocular melanoma community. Each issue highlights the latest research updates, patient stories, educational resources, and upcoming events to keep patients, caregivers, and advocates informed, connected, and empowered throughout their OM journey. Use this link to sign up today!

 Support Groups: Space for Connection

We invite you to participate in our upcoming CURE OM online support groups, which take place monthly:

• First Wednesday of each month from 1:00–2:00 PM ET / 10:00–11:00 AM PST

This group is offered in partnership with the Sidney Kimmel Comprehensive Cancer Center at Jefferson and is facilitated by Molly Vocino, MSW, LCSW, a licensed clinical oncology social worker. The group’s discussion centers on the metastatic ocular melanoma experience. If you’ve attended previously, we warmly encourage you to continue joining. Register here. 

• Fourth Thursday of each month from 7:00 – 8:00 PM EST / 4:00 – 5:00 PM PST
  This evening group is facilitated by the MRF’s Education Program Manager, Caroline Glavin, MSW. Register here. The group is open to all ocular melanoma patients and caregivers. 

These groups are designed to foster emotional support, shared understanding, and connection. Whether you’re newly navigating an ocular melanoma diagnosis or have been living with it for years, this is a space to reflect, express feelings, explore coping strategies, and find comfort in community.

For more information, please reach out to cureom@melanoma.org.

The Melanoma Research Foundation (MRF) Advocacy Program is a platform for those affected by melanoma to share their voice and transform melanoma care. Whether you are a patient, caregiver, survivor, healthcare professional or partner, YOU play a critical role in the advancement of better outcomes for the over one million Americans living with melanoma and their loved ones. Together We Can!

Ocular Melanoma Patient-Led FDA Listening Session – On January 27, 2020, the Melanoma Research Foundation’s (MRF) CURE OM initiative led by Senior Advocacy Officer Cassie Beisel conducted a first of its kind Patient-Led Ocular Melanoma Listening Session at the U.S. Food and Drug Administration (FDA). Patients, caregivers and medical professionals met with eighteen FDA leaders to share their stories and discuss the needs of the community. The stories told focused on the lack of standard of care, mis-diagnosis, the need for single arm clinical trials, the financial toxicity of the disease, and toll it takes on both patients and caregivers that are part of this orphaned disease. Read more here.

Connect with the MRF and CURE OM on Facebook, Twitter and You Tube!

It’s easy to forget that you are not alone. Below are organizations that offer supportive perspectives, insights and resources.

• EyeCare America – a program through the American Academy of Ophthalmology that offers free medical eye exams for those who qualify.
• EyeMelanoma.org – highlights educational and support resources available online for patients and their families.
• FightCancerWithMe – a blog by Tom Loverro, diagnosed with choroidal melanoma.
• LostEye – written by Jay Adkisson, who lost his eye to choroidal melanoma in 2000. LostEye includes support and links to resources for people who have lost an eye to cancer or other injury.
• OcuMel UK – a registered England charity supporting those affected by ocular melanoma.
• The Eyes Have It – a blog by Dove Karn, diagnosed with ocular melanoma.
• Read CURE OM director Sara Selig’s blog post on StandUp2Cancer on love, life and caring for her husband Gregg, who lost his battle with ocular melanoma in January 2012.
• DecisionDx-PRAME Summary
• Eye on Grace – This foundation helps people diagnosed with ocular/uveal melanoma cover the travel costs for treatment, offering grants so patients & their caregivers don’t have to choose between care and finances.
• A Cure in Sight – A national nonprofit dedicated to ocular melanoma: providing reliable education, patient-and-family support, research funding, and community connection to bring clarity, compassion and progress to this rare eye cancer

Let us know – email us at cureom@melanoma.org.

These organizations offer broad cancer-related resources, many of which apply to mucosal melanoma patients:

• American Cancer Society – Offers education, support services, transportation, and lodging resources for cancer patients and families.
• National Cancer Institute – Provides up-to-date, research-based information on cancer treatment, clinical trials, and statistics.
• CancerCare – Offers free professional support services, including counseling, financial help, and a searchable tool for local resources.
• Cancer Support Community – Nationwide network offering psychosocial support, educational programming, and community events.
• Cancer Hope Network – Connects patients and caregivers with trained volunteers who have faced similar cancer experiences.
• Help for Cancer Caregivers – A curated platform of practical tools and emotional support for those caring for someone with cancer.
• MD Anderson Network – Cancer support group resources from a leading cancer center, including survivorship tools.

These organizations focus specifically on melanoma, skin cancer awareness, or advocacy:

• Skin Cancer Foundation – Offers patient education on melanoma and skin cancer prevention, detection, and treatment.
• Melanoma Just Got Personal – Raises awareness and shares real stories from people impacted by melanoma.
• Faces of Skin Cancer – An online space for individuals with advanced skin cancer to share their experiences.
• Mike Geltrude Foundation, Mollie Biggane Melanoma Fund, and Bill Walter III Melanoma Research Fund – All of these organizations support melanoma awareness, fundraising, and education through advocacy, events, and storytelling.

• These programs offer one-on-one or community-based emotional support:
• Imerman Angels – Matches patients and caregivers with trained peer mentors (“Angels”) who’ve been through similar experiences.
• AIM at Melanoma – Connect with a Peer – Offers a peer-to-peer support program that connects you with someone who understands what it’s like to face melanoma. This can be especially valuable for those with rare subtypes like acral melanoma.

If you know of a melanoma-specific resource that is missing from this list, please email education@melanoma.org.