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Ocumel Canada - 2019 CURE OM Symposium

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Ocumel Canada - 2019 CURE OM Symposium

  1. 1. Ocumel Canada Presented by: Nigel Deacon, Natalie Richardson April 7, 2019 Eyes on a Cure Patient & Caregiver Symposium Raleigh, North Carolina
  2. 2. Results from Save Your Skin Foundation Patient Survey: Understanding Ocular Melanoma in Canada
  3. 3. • Improve patient support
  4. 4. • Improve patient support • Emphasis on emotional support
  5. 5. • Improve patient support • Emphasis on emotional support • Live our values
  6. 6. • Improve patient support • Emphasis on emotional support • Live our values Thank you to CureOM for their inspiration and support
  7. 7. Ocumel Canada 319 - 3600 Windcrest Drive, North Vancouver, BC V7G 2S5 www.OcumelCanada.ca Charitable Registration Number 85775 6589 RR0001 /saveyourskinfdn

Editor's Notes

  • Introduction
  • Nigel – brief background, story, his experience in Canada, Anecdotal evidence of gaps in care, lack of information, emotional support. How he turned to the States, met CureOM, found them to be a great support etc. Wanted to bring this back to Canada and improve. Relationship with Kathy/SYSF.

    Save Your Skin - video - Living Proof - survivor connections, friendships, Board
    My visits to the States - Philadelphia 2013, Washington, Denver, Raleigh
    Inspiration from Sara and those who have gathered around to help her
    Invitations - Board of CureOM
  • Enter Save Your Skin – Natalie brief intro, short description of SYSF, interest in supporting Nigel’s passion to improve OM patient care in Canada.

    It all started in January 2018, when Nigel wrote a blog for the SYSF website. That was a starting point for my growing understanding of this rare disease. And then, from February 2 to July 10, 2018, we ran the survey “Save Your Skin Foundation Patient Survey: Understanding Ocular Melanoma in Canada,” which assessed the experiences of Canadian patients with ocular melanoma, their care plans, and their opinions of the ocular melanoma treatment landscape. We were pleased to find an adequate number of respondents who, by sharing their experiences, confirmed our suspicions – more and better support was needed for OM patients across Canada.

    Set about a working plan, began compiling all of Nigel’s extensive research, and developed the concept that was to become Ocumel Canada.

  • What we have done – Natalie discuss, expand on details a bit
    Survey of patient experiences and needs - report - important guidance from findings
    Outreach to form relationships
    Website - quick tour of highlights
    Official launch of Ocumel Canada was Jan-15 2019
    Webinar – February 15, 2019 with Dr. Omid Hamid, LA, and Dr. Marcus Butler, Toronto Canada

    What we hope to do – Nigel discuss/detail
    Cross country checkup Challenges, some peculiar to us
    Report to help patients and caregivers, provide information to our agencies, advocate for improvements in identified areas, provide a network of up to date information on clinical trials, access, specialists, teams, advocacy for early detection
    Build patient community and support system
    Continue to build relationships with partners and global groups
  • Nigel - Looking forward- what Ocumel Canada would like to see

    Move towards a place where the ocular melanoma patient in Canada finds information and support from diagnosis of primary cancer onwards.
    New emphasis on 'emotional support’.
    How to live 'with' the disease.

    Thank you to CureOM for the invitation to present, a.nd for the inspiration and support they have given us

    Live our values Make friends. - grow Look for allies - common cause Try not to make enemies!
  • Nigel - Looking forward- what Ocumel Canada would like to see

    Move towards a place where the ocular melanoma patient in Canada finds information and support from diagnosis of primary cancer onwards.
    New emphasis on 'emotional support’.
    How to live 'with' the disease.

    Thank you to CureOM for the invitation to present, a.nd for the inspiration and support they have given us

    Live our values Make friends. - grow Look for allies - common cause Try not to make enemies!
  • Nigel - Looking forward- what Ocumel Canada would like to see

    Move towards a place where the ocular melanoma patient in Canada finds information and support from diagnosis of primary cancer onwards.
    New emphasis on 'emotional support’.
    How to live 'with' the disease.

    Thank you to CureOM for the invitation to present, a.nd for the inspiration and support they have given us

    Live our values Make friends. - grow Look for allies - common cause Try not to make enemies!
  • Nigel - Looking forward- what Ocumel Canada would like to see

    Move towards a place where the ocular melanoma patient in Canada finds information and support from diagnosis of primary cancer onwards.
    New emphasis on 'emotional support’.
    How to live 'with' the disease.

    Thank you to CureOM for the invitation to present, a.nd for the inspiration and support they have given us

    Live our values Make friends. - grow Look for allies - common cause Try not to make enemies!

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