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2019 Rare Disease Day Gala (May 10, 2019)

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2019 Rare Disease Day Gala (May 10, 2019)
Sheraton Centre Toronto Hotel
We recognize those individuals and organizations that have made extraordinary contributions to the Canadian rare disease community over this past year.

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2019 Rare Disease Day Gala (May 10, 2019)

  1. 1. CORD/RDI Rare Disease Awards Gala Celebration May 10, 2019 Sheraton Centre Toronto Hotel 123 Queen Street West | Toronto, ON
  2. 2. 2 Canada’s Rare Disease Strategy 1. Improving early detection and prevention 2. Providing timely, equitable and evidence-informed care 3. Enhancing community support 4. Providing sustainable access to promising therapies 5. Promoting innovative research
  3. 3. 3 Our journey in pictures…
  4. 4. 4
  5. 5. 5 4th Annual Rare Disease Day Fundraiser – Virden, Manitoba
  6. 6. 6 Rare Disease Day – Monument Illuminations Nathan Phillips Square Toronto, Ontario CN Tower Toronto, Ontario High Level Bridge Edmonton, Alberta Skylon Tower Niagara Falls, Ontario The Falls Niagara Falls, Ontario Langevin Bridge Calgary, Alberta CORD was proud to have the following monuments recognize Rare Disease Day on February 28 by using special themed lighting. Calgary Tower Calgary, Alberta
  7. 7. 7 RDI - PAST EVENTS RDI 5th Annual Meeting, New York, February 20 Launch of Global Commission to End the Diagnostic Odyssey of Children with a Rare Disease Report, New York, February 20 Rare Disease Day Policy Event at the United Nations: Second High-Level Event of the NGO Committee for Rare Diseases, United Nations Headquarters, New York, February 21 UN High Level Multi-Stakeholder Hearing, New York, April 29
  8. 8. 8 RDI 1st AMM 2015 Madrid, Spain RDI 3rd AMM 2017 Barcelona, Spain RDI 4th AMM 2018 Vienna, Austria RDI 2nd AMM 2016 Edinburgh, Scotland
  9. 9. 9 RDI 2018 EVENTS RARE X Conference, Johannesburg, South Africa, September 15 -16 NORD Summit, Washington DC, October 15-16 APARDO Policy Forum & Workshop, Singapore, October 27- 28 World Orphan Drug Congress, Barcelona, Spain, November 6-8 CARE 18 “un diagnostic pour tous”, Paris, France, November 12 V Encuentro Iberoamericano de Enfermedades Raras (ALIBER 5th Conference) Bogota, Colombia, November 20-22 Universal Health Coverage Day – Friends of UHC Meeting, New York, December 12
  10. 10. 10 RDI - UPCOMING EVENTS WHO 72 WHA Informal Side event « Universal Health Coverage: Including Rare Diseases to leave no one behind » May 23, Geneva, Switzerland WHO 72 WHA Formal Side event « Digital health and Rare Diseases », May 23, Geneva, Switzerland High Level Meeting on Universal Health Coverage, UNGA, New York, September 23 8th China Rare Disease Summit, Beijing, September 20-22 VI Encuentro Iberoamericano de Enfermedades Raras (ALIBER 6th Conference) September 24-28,Guadalajara, Mexico World Orphan Drug Congress, Barcelona, Spain, November 12-14 November
  11. 11. 11 International Rare Hero This award is presented to a distinguished individual….. Presented to: Marlene Haffner
  12. 12. 12 International Rare Hero This award is presented to a distinguished individual….. Presented to: Yann Le Cam
  13. 13. 13 International Rare Hero This award is presented to a distinguished individual….. Presented to: Anders Olauson
  14. 14. 14 International Rare Hero This award is presented to a distinguished individual….. Presented to: Min-Chieh Tseng
  15. 15. 15 RDI - GOVERNING COUNCIL Durhane Wong- Rieger CORD Canada Lisa Sarfaty NORD Yann Le Cam EURORDIS Ritu Jain DEBRA International Kin Ping Tsang Retina International Rachel Yang CORD China Jesús Navarro ALIBER
  16. 16. Wayne Critchley, Chair Cathy Evanochko, Vice Chair Maureen Smith, Secretary Riyad Elbard, Treasurer Patti Bryant, Executive Member-at-Large John Moore, Board Member Joanne Koskie, Board Member Patricia Posius, Board Member Board of Directors 2018 - 2019 Staff Angela Covato, Managing Director Hilary Wong-Rieger, Office Coordinator (Volunteer) Durhane Wong-Rieger, President & CEO Jane Farnham, Board Member Lisa Machado, Board Member Rick Moss, Board Member Staff
  17. 17. 17 Evening Entertainment: Cambridge Highland Dance & Company The Cambridge Highland Dance & Company (CHDC) is based in Cambridge, Ontario offers lessons in competitive Highland Dance, Modern Dance, RAD Ballet and Canadian Step Dance. The CHDC dancers have competed throughout Canada, U.S. and Scotland and have won with numerous titles and championships.
  18. 18. 18 Rare Disease International and the Canadian Organization for Rare Disorders wishes to thank the following Gala Sponsors for their generous support and dedication to the rare disease community.
  19. 19. 19 Grand Champion Sponsor
  20. 20. 20 Benefactor Sponsor
  21. 21. 21 Benefactor Sponsor
  22. 22. 22 Hope Sponsor
  23. 23. Special Thanks Caley Laxer Cassandra Malandrino Jim McQuaid Maureen Smith