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HDSA Advanced Diplomat Training HDSA Annual Convention Jacksonville, FL Sunday, June 23, 2013

HDSA Advanced Diplomat Training HDSA Annual Convention Jacksonville, FL Sunday, June 23, 2013. Diplomat Survey Feedback . Who Are HDSA Diplomats. Presentation Highlights. Most Effective Part(s) of Presentation. What YOU Want to Hear About. Presentation Tips. Presentation Tips.

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HDSA Advanced Diplomat Training HDSA Annual Convention Jacksonville, FL Sunday, June 23, 2013

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  1. HDSA Advanced Diplomat TrainingHDSA Annual ConventionJacksonville, FLSunday, June 23, 2013

  2. Diplomat Survey Feedback

  3. Who Are HDSA Diplomats

  4. Presentation Highlights

  5. Most Effective Part(s) of Presentation

  6. What YOU Want to Hear About

  7. Presentation Tips

  8. Presentation Tips • Show up early • Be entertaining -use humor, make them laugh • Eye contact • Don’t read • Project your voice • “That’s a good question” • Provide handout • Be honest

  9. “My Story” Slide

  10. Developing the “My Story” Slide • Elevator speech • Create a “hook” • A favorite comes from We Are HDSA: Jeanette says – “I signed up to be an HDSA Clinical Trials Diplomat because I didn’t sign up for HD!” – Great hook! • Photo of you/your family – put a face on HD!

  11. Developing the “My Story” Slide • Your experience in trials • If none, generate excitement about studies you are looking forward to • If you have don’t qualify (at-risk, caregiver, excluding meds or conditions, etc), how are you inspired by others’ participation? • What you liked about participating • Access to the staff/docs in a different setting • Empowerment/fighting back • Being part of solution • Placebo effect

  12. Develop Your “My Story” Slide Elevator speech Photo! Your “hook” Why are you a diplomat? Your experience/personal interest in trials What excites you about research?

  13. Keeping up With HD Science

  14. Science Resources • Hdbuzz.net • Hopes.stanford.edu • HDSA.org • EHDN- euro-hd.net • Huntington-study-group.org • Set up google alert for Huntington’s disease

  15. Expanding the Reach of the Diplomat Program

  16. Expanding Our Reach • 40 presentations have been given by 19 trained Diplomats • Support groups • 35+ presentations have been given at support groups throughout the county • Regional Conferences • 6 presentations have been given in 53 different regions

  17. Clinical Trials Diplomats, 2013 Northwest New England Upper Mid-West New York/ New Jersey Pacific/Southwest Great Lakes Mid-Atlantic South Central Southeast Clinical Trials Diplomat

  18. Expanding Our Reach: Fresh Ideas Ideas: • Articles about clinical trial participation in local chapter newsletters • Offer a CTD conference call • Table at Team Hope Walk, Celebration of Hope, other fundraisers and events • Local conferences and other educational outreach programs • ~100 more support groups to go! • Be the “go-to” person for clinical trails encouragement • Recruit more Diplomats to cover more geography • Fliers in HD clinics

  19. Clinical Trials Diplomats and HDSA Support Groups Northwest New England Upper Mid-West New York/ New Jersey Pacific/Southwest Great Lakes Mid-Atlantic South Central Southeast Clinical Trials Diplomat HDSA Support Group

  20. Expanding Our Reach: Fresh Ideas Brainstorm: Your ideas for spreading the word

  21. 21 New Ideas!

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