On this page:
OCULAR MELANOMA ORGANIZATIONS BASED IN THE U.S.
>> A Cure In Sight
"A Cure in Sight supports families who have ocular melanoma and focuses on research for a cure. Through public and private partnerships, we provide clear and reliable education information and access to a support community for patients and their caregivers."
"CURE OM (Community United for Research and Education of Ocular Melanoma) is the Melanoma Research Foundation's initiative to increase awareness, education, treatment, and research funding for ocular melanoma while improving the lives of people affected by this disease."
>> Ocular Melanoma Foundation
"The Ocular Melanoma Foundation is committed to accelerating and enhancing scientific research, advocacy, and awareness of ocular melanoma and to providing education and support to patients, their families, and healthcare professionals."
OCULAR MELANOMA ORGANIZATIONS BASED IN OTHER COUNTRIES
"The Australasian Ocular Melanoma Alliance is a group of medical, para-medical, nursing, and consumer representatives aiming to further care and treatment of patients with ocular melanoma across Australia and the world."
>> OcuMel UK
"OcuMel UK [based in England] aims to provide advice, support, and information to ocular melanoma sufferers and to help bring the treatment of ocular melanoma in line with more common cancers."
"Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular melanoma."
"The Eye Cancer Foundation is an educational and supportive resource for eye cancer patients, their families, and physicians. Our mission is two-fold; one part focused on multi-centered research of new diagnostic treatments for eye cancer research, the other focused on providing much needed patient support services."
"The Eye Tumor Research Foundation is a foundation devoted to research in eye cancers and eye tumors. The ultimate goal of the foundation is to extend life and sight and improve patient care by developing and improving methods of diagnosis and treatments."
In addition to the many smaller groups conducting research on ocular melanoma, the following large collaborations have been formed:
>> Collaborative Ocular Oncology Group (U.S. and Canada)
"The Collaborative Ocular Oncology Group (COOG) is the largest collaborative working group in North America of ocular and medical oncologists specialized in the treatment of patients with intraocular cancers, currently focusing on uveal melanoma. The COOG comprises more than 25 leading academic and private ocular oncology centers of excellence and has been continually funded by the National Cancer Institute for over a decade."
"A major strength of the Liverpool Ocular Oncology Research Group (LOORG) is this capability to join forces with ocular oncology clinicians, medical oncologists, pathologists, medical statisticians, basic scientists, and industry to ensure that the research it conducts addresses the key questions that aims to bring about improved survival and quality of life for ocular oncology patients."
>> Ophthalmic Oncology Group (Europe)
"The Ophthalmic Oncology Group (OOG) is an independent scientific group devoted to clinical ophthalmic oncology and related basic-science research. The aims of the OOG are to improve the practice of ophthalmic oncology in Europe; develop an internet-based data system to share scientific information in the field of ophthalmic oncology; promote education relating to ophthalmic oncology; conduct multicenter research studies; and organize conferences relating to ophthalmic oncology."
>> UM Cure 2020 Consortium (7 European Countries)
"The overall goal of the UM Cure 2020 Consortium is to combine the efforts of several European Centres of Excellence in clinical ocular oncology and basic research with patient organizations to develop new therapeutic approaches to treat metastatic uveal melanoma and share this new knowledge efficiently."
>> BAP1 Interest Group (International)
"Established as a medium for international collaboration on BAP1 and BAP1-TPDS between clinicians (oncologists, ophthalmologists, pathologists, geneticists, and dermatologists) and researchers. We have over 85 members who have published extensively on BAP1." "BAP1-TPDS [tumor predisposition syndrome] is a hereditary cancer syndrome caused by germline mutations in the BAP1 [tumor suppressor] gene. It predisposes patients to a variety of cancers and benign lesions. [...] Carrier frequency in uveal melanoma patients is reported to be 1%."
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