Ocular Melanoma Patient Resources
The MRF’s CURE OM initiative provides ocular melanoma patients with the most up-to-date resources available. Below are a list of resources specific to ocular melanoma. You might also like to view our CURE OM Brochure or past issues of Eye on OM, the CURE OM e-newsletter. Want to educate others on ocular melanoma? View the Ocular Melanoma Fact Sheet. We encourage you to:
In-Person Events & Recordings
Eyes on a Cure: Patient & Caregiver Symposium
The 2019 Eyes on a Cure: Patient & Caregiver Symposium was held on April 5-7, 2019 in Raleigh, NC. More than 130 OM patients, survivors, caregivers and advocates gathered to learn the latest in OM research and treatment from internationally renowned researchers, physicians and ocular melanoma experts. In addition to the scientific agenda, a full schedule of wellness activities was also offered. Check back soon for our 2020 event date and location announcement!
Past ocular melanoma educational events can be found below:
- 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
Find an OM Specialist
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.
Questions to Ask Your Doctor
Doctor’s visits can be overwhelming. These questions can help guide your conversations with your doctor or your treatment team.
Ask the MRF Nurse
Do you have a specific, more medically based question? If so, you can submit your question to the MRF nurse by emailing firstname.lastname@example.org. You can expect a personalized answer from our experienced nurse within 72 hours.
Clinical Trial Finder
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.
CURE OM Support Groups
The CURE OM has partnered with Thomas Jefferson University to offer ocular melanoma support groups.
Ocular Melanoma Resources, Organizations & Blogs
It’s easy to forget that you are not alone. Below are blogs that share supportive perspectives and insight.
- 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.
Know of other blogs or resources you think others would find useful? Let us know – email us at email@example.com.