Launch of Ocumel Canada Offers New Hope for Canadians Diagnosed With Rare Ocular Melanoma
TORONTO, Jan. 15, 2019 /CNW/ - Save Your Skin Foundation, a Canadian, patient-led, not-for-profit organization, is launching Ocumel Canada to increase awareness, advance treatment options, and improve patient outcomes for Canadians touched by Ocular Melanoma, a rare but aggressive form of melanoma.
Save Your Skin Foundation (SYSF) has joined forces with ocular melanoma (OM) survivor and advocate Nigel Deacon, to create Ocumel Canada and improve OM patient care across Canada.
"Ocular melanoma is a rare and frightening disease and patients find themselves on a very lonely path," says Nigel Deacon, Ocular Melanoma survivor and advocate. ""I believe that Ocumel Canada will support patients, improve care pathways and create hope."
Ocumel Canada has conducted a patient survey to understand and document the experiences of OM patients in Canada, identifying key gaps in areas of diagnosis, access to treatment, and patient care. Ocumel Canada has also connected with innovative OM treatment researchers, explored testing options for ocular melanoma in Canada, and partnered with OM patient support groups around the globe for knowledge exchange.
"Too many ocular melanoma patients are being left behind, because of inconsistent referrals and treatment, or lack thereof, and that has to stop," says Natalie Richardson, Stage III melanoma survivor and Managing Director of Save Your Skin Foundation, "Ocumel Canada will represent patients in their time of unmet need, and will support them in finding a quick referral to an expert team and access to appropriate treatment across the country."
In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, Ocumel Canada, is dedicating to the following:
- Advocating for early detection of ocular melanoma
- Enabling access to early treatment of primary ocular melanoma
- Working towards a consistent approach to treatment of metastatic ocular melanoma
- Supporting patients who have been diagnosed with primary or metastatic ocular melanoma
- Building a network of support for patients and caregivers
About Ocumel melanoma
Ocular melanoma is rare, affecting approximately five in a million people. While it represents only 5% of melanomas, ocular melanoma is rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.
There are no established risk factors for ocular melanoma, but it often occurs in blue-eyed, fair-skinned people over sixty years old. Treatment can be successful if the tumours in the eye are caught early. Around 50% of tumours will metastasize, usually in two to five years. Metastasis is to the liver in approximately 90% of these cases, but can also occur in the lungs, bones, brain or abdomen.
About Save Your Skin Foundation
Save Your Skin Foundation (SYSF) is a national patient-led not-for-profit group dedicated to the fight against non-melanoma skin cancers, melanoma and ocular melanoma through nationwide education, advocacy, and awareness initiatives. Save Your Skin Foundation is committed to playing an active role in reducing the incidence of skin cancer in Canada, and to providing compassionate support for all Canadians living with skin cancers.
SOURCE Save Your Skin Foundation