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Volunteer Advocate

Developing National Standards in Canada to successfully transition transplant patients with Cystic Fibrosis

As a joint initiative between Cystic Fibrosis Canada, Toronto Lung Transplant program, and St. Michael’s Hospital Toronto Adult Cystic Fibrosis Centre, we are Developing National Standards in Canada to Successfully Transition Transplant Patients with Cystic Fibrosis. Part of this initiative is to understand the current challenges and gaps in care as well as providing educational webinars for patients and care-givers. We are also planning workshops for healthcare professionals to be provided by healthcare providers in specialized areas who are knowledgeable about CF and transplant. We hope through providing more education and developing standardized protocols related to transplant and CF, we can help ensure patients are successfully transitioning throughout the entire transplant process and also develop a resourceful circle of care.

(Click on the photo below to view a larger version of the poster presented in this photo)

Joanna Valsamis, Chief Healthcare, Research & Advocacy Officer, CF Canada, and Dr. Cecilia Chaparro, transplant physician at University Health Network – Toronto General Hospital presenting at the Vertex Circle of Care Colloquium at the 2017 North American CF Conference. Kate Gent (not pictured), nurse co-ordinator at St. Michael`s Hospital, Toronto, is also a collaborator on the grant.

Joanna Valsamis, Chief Healthcare, Research & Advocacy Officer, CF Canada, and Dr. Cecilia Chaparro, transplant physician at University Health Network – Toronto General Hospital presenting at the Vertex Circle of Care Colloquium at the 2017 North American CF Conference. Kate Gent (not pictured), nurse co-ordinator at St. Michael`s Hospital, Toronto, is also a collaborator on the grant.

Healthcare Professional Workshops - Schedule

Topic: Overview of Lung Transplant
Speaker(s): Dr. Cecillia Chaparro
Date of Presentation: November 30th, 2017, 8:30 a.m. EST
Recording: Coming soon

Topic: Pharmacy Overview
Speaker(s): Daniel Cortes & June Wang
Date of Presentation: December 4th, 2017, 12:00 p.m. EST
Recording: Coming soon

Topic: Liver Disease
Speaker(s): Dr. Tanja Gonska
Date of Presentation: December 18th, 2017, 1:30 p.m EST
Recording: Coming soon

Topic: Gastrointestinal (GI) and Nutrition
Speaker(s): Dr. Paul Pencharz & Brooke Stewart
Date of Presentation: December 18th, 2017, 2:30 p.m EST
Recording: Coming soon

Topic: CF-related diabetes
Speaker(s): Kate Gent & Ronalee Robert
Date of Presentation: December
Recording: Coming soon

Topic: Vaccines
Speaker(s): Kevin Curly
Date of Presentation: January 2018
Recording: Coming soon

Topic: Physiotheraphy & Exercise
Speaker(s): Kenneth Wu & Lisa Wickerson
Date of Presentation: January 2018
Recording: Coming soon

Topic: Bone health
Speaker(s): Dr. Erin Norris
Date of Presentation: January 2018
Recording: Coming soon

Topic: Sexual Health Issues
Speaker(s): Dr. Elizabeth Tullis
Date of Presentation: February 2018
Recording: Coming soon

Topic: Paediatric Transplantation
Speaker(s): Dr. Melinda Solomon
Date of Presentation: February 2018
Recording: Coming soon

Topic: Infection Control Guidelines
Speaker(s): Dr. Shahid Husain
Date of Presentation: 2018
Recording: Coming soon

Topic: Mental Health
Speaker(s): Dr. Kien Dang
Date of Presentation: 2018
Recording: Coming soon

Topic: Relocation & Financial Considerations
Speaker(s): Annie Thomas-Diceman & Laura Middleton
Date of Presentation: 2018
Recording: Coming soon

Patient/Caregiver Webinars – Schedule (*coming in 2018)

Topic: Preparing for a Transplant
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Topic: Financial Considerations & Relocation
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Topic: Psychosocial Challenges
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Topic: TBD
Speaker(s): TBD
Date of Presentation: TBD
Recording: TBD

Resources

Under development

Funding for this program was provided by Vertex Pharmaceutical’s Circle of Care Grants.

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