Save Your Skin Foundation has been working with ocular melanoma (OM) survivor and advocate Nigel Deacon, to improve OM patient care across the country. Together we created a survey and resulting report in order to gain insight into the Canadian OM patient journey, and we have connected with innovative OM treatment researchers as well as explored testing options in Canada for ocular melanoma, also known as uveal melanoma. Additionally, we have partnered with OM patient support groups around the world, such as Cure OM (an initiative of the Melanoma Research Foundation, United States), and Ocumel Ireland and Ocumel UK.
We are inspired by the work being done by these groups, and by the feedback we receive from patients who need better support in their diagnoses of primary and/or metastatic ocular melanoma, to work toward better and more standardized care in all provinces in Canada. We have identified gaps in OM patient care which can vary from centre to centre, and we recognize the need to advocate for patients to receive treatment for their disease, especially when it is metastatic.
In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, we have created a dedicated initiative called Ocumel Canada, which will serve as our platform for increasing education and community around the topic. To learn more please visit us at www.OcumelCanada.ca