On this page, you will find not-for-profit groups focused on ocular melanoma:
OCULAR MELANOMA NONPROFITS 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
"CURE OM 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 NONPROFITS 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."
MPNErare is the Melanoma Patient Network Europe's special interest group for ocular melanoma and other rare melanomas. "MPNE's mission is to systematically address problems faced by the European melanoma community in a constructive, result-oriented, and evidence-based manner."
"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."
>> OcuMel UK
"OcuMel UK aims to help ocular melanoma patients and their families by providing accurate, up-to-date information and emotional support via our website, helpline, and online forums."
Ocular melanoma is a part of the following U.S.-based organizations' ocular oncology research support:
"The Eye Cancer Foundation supports research efforts that will advance treatment methods and overall the rate at which eyes and lives are saved."
"The ultimate goal of the Eye Tumor Research Foundation is to improve patient care by improving methods of diagnosis and treatment of the affected patient."
Ocular melanoma is a part of the following U.S.-based organizations' melanoma research support:
"MRA supports both individual investigator and collaborative team projects focused on translational, innovative research that will impact the prevention, diagnosis, staging, and treatment of melanoma in the near and intermediate future." [Provide 'uveal' as "keyword" entry to filter search results on this grant awards page.]
"Our research grants support the study of melanoma prevention, diagnosis, and treatment across the spectrum of the disease, including cutaneous, ocular, and mucosal melanoma. The MRF Research Program supports research across their entire career — from medical students to established investigators." [Select 'ocular melanoma' in "melanoma type" options to filter search results on this grant awards page.]
In addition to the many institutions conducting scientific research on ocular melanoma, the following larger 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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