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WORKSHOP F: Rare Cancer Networks Bridging Common Cancers and Rare Conditions

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A Rare International Dialogue (Sunday, May 12, 2019)
Theme Six: Rare Cancer Networks and Personalized Care
Rare Cancer Networks Bridging Common Cancers and Rare Conditions - John Hopper, Co-Chairman, NORD Rare Cancer Coalition, Lisa Machado, CORD/Canadian CML Network, Louise Binder, Save Your Skin

Publicada em: Saúde e medicina
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WORKSHOP F: Rare Cancer Networks Bridging Common Cancers and Rare Conditions

  1. 1. Workshop goals 1! Explore mutual benefits of exchanging information across rare cancer organizations Determine ways to collaborate on awareness raising, education, research Identify common issues where the rare cancer community can align to speak with one strong voice
  2. 2. 12:00pm Workshop agenda 2! 09:30amIntroductions 09:40amJohn Hopper, NORD Rare Cancer Coalition 10:00amLisa Machado, Canadian CML Network 10:15amLouise Binder, Save Your Skin 10:30amWhy Rare Cancers? Why Collaboration? 11:00amPrioritizing areas for collaboration 11:45amNext steps Workshop ends
  3. 3. Creating a united voice to accelerate progress. May 12, 2019
  4. 4. Welcome: Who is John Hopper? Pre med drop out! Now… •  Co chair: NORD Rare Cancer Coalition •  President: Fibrolamellar Cancer Foundation (ultra rare cancer) •  Co chair: GI Cancers Alliance •  Board Director: National Pancreas Foundation •  Former Division President: McCann Healthcare; Ogilvy Health
  5. 5. Rare Cancers in the USA - Facts •  Definition: cancer that occurs in fewer than 15 out of 100,000 people each year. •  Most types of cancer are considered rare, and they are often more difficult to prevent, diagnose, and treat than the more common cancers. *National Cancer Institute •  Genomic profiling = More and more cancers will be defined as rare (e.g. many variations of breast cancer)
  6. 6. Each year about 81,000 young people (ages 0 – 39) Are diagnosed with cancer in the U.S. accounting for about 5% of U.S. cancer diagnoses.
  7. 7. •  Only united group of rare cancer advocacy organizations in the United States •  Providing members with opportunities for information sharing, networking, collaborative educational programs, awareness raising and a presence at major conferences. Background
  8. 8. Rare Cancer Coalition - Objective •  Form a close knit, multi-stakeholder community to work collaboratively on issues that the greater rare cancer community faces. •  While the patient organization coalition members are focused on different diseases, they face common challenges that may be more effectively addressed as a group.
  9. 9. RCC: Concept - to - reality •  Concept: •  2016/2017 NORD Conference lunch round tables •  Two lunch tables in 2016 •  Six lunch tables in 2017 •  2016 Interest from Federal Government and Industry •  2018 Member conference call – official launch
  10. 10. RCC: Concept – to - reality Reality: •  2018 •  Official launch 2018 •  Co Chairs chosen: Jim Palma, NORD board director/ President Target Cancer and John Hopper •  Membership growing •  Presence at ASCO •  First “spotlight” panel at NORD •  Department of Defense announces Rare Cancer research funding •  2019 •  National Cancer Institute- Rare Disease Day •  World Orphan Drug Conference- Rare Cancer Panel •  ASCO Booth
  11. 11. Our Members
  12. 12. Rare Cancer Collaboration •  National Cancer Institute: •  Rare Tumor Patient Engagement Network (RTPEN) •  MyPart –Collaborative community to accelerate research •  FDA: Drug approval acceleration •  Industry •  Department of Defense
  13. 13. Example: Fibrolamellar Cancer Foundation RCC Impact •  More effective visibility with critical stakeholders in rare cancer •  NCI •  Broad Institute •  FDA •  Research Community •  Pharma
  14. 14. What’s next? •  Global Collaboration •  Think tanks •  Focus on critical issues, e.g access to care; cost of care, etc. •  Industry funding/sponsorship •  Academia as members •  More!
  15. 15. Learn more •  Contact: Debbie Drell National Organization for Rare Diseases 1779 Massachusetts Avenue, Suite 500 Washington, DC 20036 #202-545-3971 ddrell@rarediseases.org
  16. 16. A rare cancer diagnosis changes everything. Collaboration helps us move forward living RARE lisa@cmlnetwork.ca cmlnetwork.ca @cdncmlnetwork
  17. 17. What’s so unique about rare cancers? Lack of information & education Remote and not-so-remote areas underserved Limited reimbursement Lack of public awareness Few or no support organizations
  18. 18. The reality of advocacy in the world of rare cancers. Patient Support Education, peer connection, navigation Health Policy Influence government/policy- makers Research Collaborate with industry, clinicians Local Own backyard issues National Partner with organizations to share information, support, promote Global Members of international like- minded bodies
  19. 19. Thank you lisa@cmlnetwork.ca cmlnetwork.ca @cdncmlnetwork
  20. 20. CORD Workshop May 12th 2019 Louise Binder Health Policy Consultant Save Your Skin Foundation louise.binder49@gmail.com
  21. 21. Mutual Benefits Better Outcomes for all
  22. 22. Some Ways to Collaborate •  First rule of advocacy : Ask for advice from your community and patient groups directly impacted where appropriate •  Work on issues collaboratively dividing up the tasks based on expertise , experience •  Provide reports back to community from conferences/ meetings you attend •  Invite other patient representatives to meetings as appropriate
  23. 23. Ways to Collaborate (cont’d) Share all information you receive that you consider potentially relevant conference/ meeting notices, consultation requests Hand the ball over to others where appropriate Ask for advice from your community and patient groups directly impacted where appropriate Mentor or be mentored
  24. 24. Some Ways to Collaborate •  What do you suggest ?
  25. 25. Common Issues •  Over to you !