rare cancers - how to empower patients & advocacy organizations through collaboration

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How to Empower Patients and Advocacy Organizations through Collaboration

Rare Cancers

December 9, 2016

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Panelists

Martine EliasDirector of Access, Advocacy & Community Relations Myeloma Canada

David JosephyPresidentGIST Sarcoma Life Raft Group Canada

Durhane Wong-RiegerPresident & CEO Canadian Organization for Rare Disorders (CORD)

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GIST Sarcoma Life Raft Group Canada

Gastrointestinal Stromal Tumour:

• a rare sarcoma

• Several effective oral drugs (targeted TKIs)

• LRGC is a registered charity

• >125 members across Canada

• Our Vision: To support activities resulting

in a cure for GIST, bringing every Canadian

affected by this rare cancer onto our Life

Raft until we achieve that goal

• Annual Day of Learning and occasional

local patient gatherings

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OUR MISSION Myeloma Canada is the only national non- profit organization uniquely devoted to the Canadian myeloma community. Founded in 2005 by two myeloma patients, Myeloma

Canada is a patient-driven, patient-focused grassroots organization, whose goals are to:

Provide educational resources and support to patients, families and caregivers

Increase awareness of the disease and its effects on the lives of patients and families

Facilitate access to new therapies, treatment options and heath care resources

Foster, support and fund Canadian Research efforts to improve patient outcomes and ultimately help find a cure for myeloma

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• Canadian Organization for Rare Disorders

(CORD) — Network of 102 Patient Groups

• Mission: Improve lives of all those affected

by rare diseases

• Mandate: Advance rare disease policy;

improve screening, diagnose and access to

clinical trials and treatment; develop

patient group capacity; support research;

collaborate

• Durhane Wong-Rieger, PhD,

President and CEO

Ottawa, ON Rare Disease Day 2016 Parliament Hill

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What we will discuss• Introduction to rare cancers and key issues• Rare cancers, small but mighty patient groups!

– Life Raft Group (gastrointestinal stromal tumors)

– Myeloma Canada• Collaboration across patient organizations

and lessons learned from abroad– Europe

– Australia• Qs and As

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Definitions - What’s a Rare Cancer?

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One of the Challenges: Impact vs. Attention and Research – Australia Data

2015 Cancer Audit

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Screening – Diagnosis – Prevention

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Access to Specialists and Referrals

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Regulatory Challenges and Issues

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Health Technology Assessment Programs – Evaluation Opportunities and Challenges

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Treatment Pathways

• Companion diagnostics• Clinical trials - access to the latest therapies• Off-label use and access• Reimbursement• Sequencing and treatment

guidelines

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National and Provincial Rare Disease and Orphan Drug Strategies - What Would They

Mean for Rare Cancers?

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Attention and Awareness

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For Organizations - What Are the Challenges - Administratively, etc…

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Is There an Opportunity or a Need for the Rare Cancers Community to Come Together? What

can we learn from other jurisdictions?

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Final Thoughts

• For the individual caregivers and patients on the line - what can they do?

• For groups, how can they work together? CORD, CCSN, etc.

• Next steps for the cancer survivor community more broadly

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Thank you!

William (Bill) Dempsterwdempster@3sixtypublicaffairs.com613.800.8344 (direct)613.614.0283 (mobile)

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Canadian Cancer Survivor Network Contact Info

Canadian Cancer Survivor Network1750 Courtwood Crescent, Suite 210Ottawa, ON K2C 2B5Telephone / Téléphone : 613-898-1871

E-mail: jmanthorne@survivornet.ca or mforrest@survivornet.ca

Web site: www.survivornet.ca

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