CORD Rare Drug Conference: June 8-9, 2022 Global, International, and National Rare Disease Networks Canadian Network of Rare Disease Centres of Excellence - Paula Robeson, Children’s Healthcare Canada

1. Toward a National Rare Disease Network of Centres of Excellence:
Exploring potential collaborations
Canadian Organization for Rare Disorders Conference
June 8, 2022

2. Children’s Health and Healthcare in Canada
(Abacus polling 2019, 2021; CIHI and RMHC Canada, 2021; Children’s Healthcare Canada,
2020; PHAC 2018; CPS 2020)
• ~375,000 inpatient admissions each year
• 25% of admissions represent children <1y
• 20% of all admissions are in NICU/PICU
• Complexity of admissions increasing – both physical and mental health
• 1.8M children in Canada have a diagnosed rare disorder (many others at
risk or undiagnosed)
• Up to 80% of all medications prescribed to children are off-label or fall
outside Health Canada’s approved use
• 88% of families have not gotten or stopped a Rx med because of cost
• 15-20% of youth (12-19y) live with chronic illness or disability that limits
daily activities
• 8% of children 4-18y experience chronic pain severe enough to interfere
with school, social and family activities

3. About
Children’s
Healthcare Canada

4. Children’s
Healthcare
Canada
Member-based organization celebrating
nearly 55 years of history
1968 – CAPH created by leadership of 6
Children’s Hospitals
2001 – CAPH mandate evolved to embrace
membership across continuum of care (CAPHC)
October 23 2018 – Launch of Children’s
Healthcare Canada
45 members representing 250 individual health
delivery organizations
Refreshed SPARK Knowledge Mobilization
Program in 2021

5. Vision
Healthy, vibrant children and youth.
Mission
Through purposeful partnerships, we
accelerate excellence and innovation
in health systems caring for children
and youth.

6. Strategic Directions + Priority Populations

7. 1.
Inform the development of
innovative and integrated
health systems
Our Strategic Directions

9. Intro
Connected by Purpose. Driven
by Passion.
Value Networks are a member benefit that
spark | action
1. Practice Networks driven by strategy
2. Family Network driven by family partners
3. Child Health Hubs driven by members
4. Executive Circles for child health leaders

13. 2.
Share evidence and
accelerate implementation of
high quality child-, youth-, and
family-centred healthcare
wherever it is delivered.
Our Strategic Directions

14. SPARK Knowledge Mobilization (KMb)
Shared Platform for Advocacy, Research, & Knowledge
• SPARK: Live – Webinars (2x/m)
• Latest research & resources
• Member- or family partner-led innovations in children’s
healthcare
• SPARK: Conversations – Podcasts series (1x/m)
• Interviews w/ system leaders on wicked problems
• SPARK: News – e-Bulletin (2x/m)
• SPARK: Impact – Strategic KMb support for researchers
• Other SPARK offerings, e.g.,
• Video/audio clear language abstracts
• Posters – better poster design
• Infographics
• Social media
• Network access
• SPARK learning and networking – live events
• National Conference (annual)
• Pop-Up events (2-4/y)

15. 3.
Unite strategic partners to
foster excellence in children’s
health
Our Strategic Directions

16. SKIP is a national mobilization network that uses a hub-and-spoke model to
create, build up, and leverage connections across Canada.
SKIP est un réseau national de mobilisation qui utilise un modèle de réseau en étoile
pour créer, bâtir et mobiliser des contacts et connexions partout au Canada.

17. Our Vision / Notre vision
Healthier Canadians
through better pain
management for children.
#ItDoesntHavetoHurt /
#PasBesoinDeFaireMal
Des Canadiens en meilleure
santé grâce à une meilleure
gestion de la douleur pour
les enfants.

18. Elise Kammerer &
Megan MacNeil
Chad Larabie
Sarah Loemba
Paula Robeson
Laura Gibson
#ItDoesntHavetoHurt /
#PasBesoinDeFaireMal

19. Samina Ali
Fiona Campbell &
Jennifer Stinson
Allen Finley
Emily Gruenwoldt
Evelyne D. Trottier
Marie-Joëlle
Doré-Bergeron
#ItDoesntHavetoHurt /
#PasBesoinDeFaireMal

20. 4.
Advocate to improve children’s
health and health systems.
Our Strategic Directions

21. 2019
Election priority

22. JEAN YVES DUCLOS: MINISTER OF HEALTH
• Ensure domestic supply & roll-out of COVID-19 vaccines & therapeutics
• Ensure the study of the long-term health impacts of COVID-19, including the effects of long
COVID on different groups, notably vulnerable populations and children
• Develop a plan to modernize the federal research funding ecosystem
• Ensure health care workers are supported and recruited across the country and advance an
integrated, comprehensive and patient-centric strategy, harnessing the full potential of data and
digital systems
• Expand virtual care
• Continue towards national universal pharmacare, while proceeding with a national
strategy on high-cost drugs for rare diseases
• Finalize the front-of-package labelling to promote healthy food choices and
supporting restrictions on the commercial marketing of food and beverages to children.
• Accelerate the development of the National Autism Strategy.

23. Federal Calls to Action 2022
1. Make children, youth, and families a priority during
COVID recovery.
2. Earmark 25% of CMHT to urgently build capacity in
children’s mental health systems across jurisdictions.
3. Invest to advance children’s health research and
knowledge mobilization agenda to ensure an evidence-
informed approach to policy and practice decisions
4. Ongoing communications, led by federal government, to
boost uptake of a COVID vaccine deemed safe and
effective for children and youth.

24. Canadians’ Perspectives
(Abacus Polling 2021-22)
92% of Canadians thinks children should be a top
priority for the federal government’s COVID-19 recovery
plan
70% of Canadians expect the pandemic to have
long-term effects on children
62% of Canadians felt the pandemic has impacted
children by increasing the inequality between
families depending on household income and wealth

25. Raising our Voice:
Making Headlines
• Children's health leaders fear the 'pandemic after the
pandemic'
• Children are bearing the brunt of COVID-19
• 'Intolerable wait times’: Looming children's health crisis
post-pandemic
• Sounding the alarm on the crisis in children's health care
“Children have largely been the unheard voices of the COVID-
19 pandemic, particularly children who have complex medical
needs or who may be coming from vulnerable living and family
conditions.”
- Margaret Fullerton, Alberta Children’s Hospital

27. CHC Federal Engagement
• Federal Pre-Budget Submissions to
the Standing Committee on Finance
• COVID Emergency Relief Funding
for Members
• Health Action Lobby (HEAL)
• House of Commons Committee on
Health Submission to Child Health
Study

28. Thank you!

29. Intro
Reflections? Questions? Comments?