Cystic Fibrosis Canada is aiming to expand the reach of clinical knowledge beyond our specialized CF Clinics, so that every Canadian living with cystic fibrosis receives the care they need, when they need it. Particularly given cystic fibrosis is a rare disease, it is important that there is a deep and ever evolving understanding that is also shared beyond CF clinics, in hospitals and other stops in the medical journey. With that goal in mind, we have worked with leading experts across the country to develop standards of care that will provide relevant information in a Canadian context, and can be referenced as needed by any healthcare provider.
These guidelines and standards of care will provide a comprehensive source of knowledge on the main disciplines and components of cystic fibrosis care.
Canadians with cystic fibrosis and their loved ones are able to mention these resources to their clinician, if they are receiving care outside of a specialized CF clinic, as a reference point if and when needed.
Currently available Canadian guidelines, recommendations and standards of care:
Additional standards are currently in development, and will be added to this page as they become available.
The development and publication of these materials has been made possible by the contributions of Cystic Fibrosis Canada’s Healthcare Advisory Council and other leading CF experts, as well as the generosity of our donors.
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.
Topic:Overview of Lung Transplant Speaker(s):Dr. Cecillia Chaparro Date of Presentation: November 30th, 2017, 8:30 a.m. EST Recording: View the recordinghere
Topic: Pharmacy Overview Speaker(s):Daniel Cortes & June Wang Date of Presentation:December 4th, 2017, 12:00 p.m. EST Recording: View the recording here
Topic: Liver Disease Speaker(s): Dr. Tanja Gonska Date of Presentation: December 18th, 2017, 1:30 p.m EST Recording: View the recordinghere
Topic: Gastrointestinal (GI) and Nutrition Speaker(s): Dr. Paul Pencharz & Brooke Stewart Date of Presentation: December 18th, 2017, 2:30 p.m EST Recording: View the recordinghere
Topic: Physiotherapy & Exercise Speaker(s): Kenneth Wu & Lisa Wickerson Date of Presentation: January 31th, 2018, 9:00 a.m EST Recording: View the recordinghere
Topic: Mental Health Speaker(s):Dr. Kien Dang Date of Presentation: February 9th, 2018, 9:30 a.m EST Recording: View the recording here
Topic:Relocation & Financial Considerations Speaker(s):Annie Thomas-Diceman & Laura Middleton Date of Presentation: February 9th, 2018, 3:30 p.m EST Recording: View the recordinghere
Topic: CF-related diabetes Speaker(s): Kate Gent & Ronalee Robert Date of Presentation: February 28th, 2018, 9 a.m EST Recording: View the recordinghere
Topic: Vaccines Speaker(s): Kevin Curly Date of Presentation: TBD Recording: TBD
Topic: Bone health Speaker(s): Dr. Erin Norris Date of Presentation: TBD Recording: TBD
Topic: Sexual Health Issues Speaker(s): Dr. Elizabeth Tullis Date of Presentation: TBD Recording: TBD
Topic: Paediatric Transplantation Speaker(s): Dr. Melinda Solomon Date of Presentation: TBD Recording:TBD
Topic: Infection Control Guidelines Speaker(s): Dr. Shahid Husain Date of Presentation: TBD Recording: TBD
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
Funding for this program was provided by Vertex Pharmaceutical’s Circle of Care Grants.
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Dec 1st- Dec 24th 2023
Wrapping for a Cure - Calgary 2023
Get in the Holiday spirit by volunteering your time for a good cause!
Cystic Fibrosis Canada is excited to announce the return of Wrapping for a Cure located in North Hill Centre & Southcentre Mall, Calgary, Alberta.
Individuals, teams, and workplace employees can give a little back during the Holiday season by volunteering to wrap gifts at any of our participating malls. Funds raised from Wrapping for a Cure go back into the local community.
Holly and Corey Smith along with their team of family and friends have been longtime participants of the Kinsmen Club of Sackville Curling Funspiel and the Walk to Make Cystic Fibrosis History. Holly also sits on the Funspiel planning committee and took time to share her story with Kinsmen Andy Robinson.