Keynote talk �

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Patrick Sullivan

President and Founder

Team Finn Foundation, Canada

A Place For Advocacy In Genomic and Clinical Data Sharing

A Want To Start With A Story

The Boy Who Lived

What Success Looks like

6

About:

GA4GH 11th Plenary brings together organizations and stakeholders from the genomics and health community for keynotes, talks, and workshops focused on genomic and clinical data sharing issues that pervade diverse industries, disciplines, and communities.� �Attendees will have the opportunity to learn about GA4GH's technical standards and policy frameworks, which aim to break down the many barriers to data sharing and advance genomic research.

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Join us in celebrating 10 years of collaborative efforts and groundbreaking advancements. Over the past decade, GA4GH has emerged as a leading force in driving responsible and effective genomic data sharing to benefit human health. In this session, we will take you on a journey through the evolution of GA4GH, showcasing its pivotal role in shaping the genomics landscape and vision for the future.

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GA4GH Successes

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• How a bot beamed from California to Japan may stop unnecessary mastectomies for breast cancer patients (news story)
• New release of GA4GH Beacon expands genomic and clinical data access (news story)
• EJP RD promotes global data sharing to bring hope to rare disease patients (story with video)
• Data sharing brings hope to rare disease patients around the globe (story with video)
• Greater than the sum of its parts: how Matchmaker Exchange is being used to solve today’s hardest rare disease cases (news story)
• Setting The Standard: The Path For International Data Sharing (video)
• BRCA Exchange: Data sharing for the Benefit of Science and Medicine (video)

Mark Fiume

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Advances in genomics promise to change the way medicine is practiced, in many ways. They will improved our abilities to assess risk, diagnose, and treat patients who have or may develop genetic diseases. Technology is currently the biggest driver in genomics, and so we're very excited to contribute to the effort of trying to make people healthier through technological advancement.

What Does All Of That Actually Mean?

PRecision Oncology For Young PeopLE

13

What We Are Doing Is Not Working

ALL-HR

ALL post-SCT

AML

Brain Tumors

Ewing Sarcoma

Neuroblastoma

NHL

Osteosarcoma

Rhabdomyosarcoma

Dr. Stefan Pfister, DFKZ, Heidelberg

Opportunities

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Role of Research Advocates

• Tell stories
• Ensure patient focus
• Add a human face and sense of urgency
• Stimulate discussion
• Provide diverse perspectives
• Spur innovation
• Expand public understanding
• Climb over, break through or get around barriers

In par From: Perlmutter J, Bell SK and Darien G. Cancer Research Advocacy: Past Present and Future. Cancer Research, Cancer Research, 2013.

Characteristics of Patient Advocates

Involve Advocates In Research Everywhere

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Based on: Perlmutter J, Bell SK, Darien, G. Cancer Research Advocacy: Past, Present, and Future. Cancer Research. 2013; 73(15) 4611-15.

GA4GH Successes

20

• How a bot beamed from California to Japan may stop unnecessary mastectomies for breast cancer patients (news story)
• New release of GA4GH Beacon expands genomic and clinical data access (news story)
• EJP RD promotes global data sharing to bring hope to rare disease patients (story with video)
• Data sharing brings hope to rare disease patients around the globe (story with video)
• Greater than the sum of its parts: how Matchmaker Exchange is being used to solve today’s hardest rare disease cases (news story)
• Setting The Standard: The Path For International Data Sharing (video)
• BRCA Exchange: Data sharing for the Benefit of Science and Medicine (video)

“Our lives are defined by opportunities – even the ones we miss” �F. Scott Fizgerald