Clinic Connect with CanPKU+

Notice

Due to challenges related to attendance projections and speaker retention, we made the extremely difficult decision to reimagine this year's Building Bridges/Batir des ponds program. While this decision was not made lightly, we believe it is important to ensure our programs remain sustainable, financially responsible, and responsive to the evolving needs of families, professionals, and the broader metabolic community.

In answer to these needs, we will relaunch this educational component as an expanded virtual educational initiative, allowing for broader national accessibility, improved flexibility for language preferences, expanded participation opportunities, and stronger reach across Canada. Although some programming will still happen on June 6th, majority will be over various months to come.

We hope to continue offering in-person Building Bridges events in the future, but future in-person planning will be evaluated based on regional readiness, financial responsibility, community need, participation, and relationship strength in the region being served.

CanPKU+ remains committed to strengthening relationships with clinics, healthcare providers, researchers, and allied professionals across all regions of Canada.

We recognize that there may be barriers, frustrations, communication gaps, resource limitations, or collaboration challenges that have affected engagement in the past. We genuinely want to hear and understand those experiences.

Feedback Can Be Sent To

• Nicole Pallone, Chair of the Board: nicole.pallone@canpku.org
• Tanya Chute Nagy, President and CEO: tanya.chute@canpku.org
• Adam Clarke, Director of Strategic Relations: adam.clark@canpku.org
• Anonymous feedback form: https://forms.gle/KsiLBpdcFwaJiemx9

Changes Already Underway Based on Previous Feedback

• New leadership and launching of the CARES Pillars (Same model, newly defined)
• Designating Adam Clarke as Director of Strategic Relations to help implement and maintain relationship improvements
• Reviewing, revising, and creating various policies and procedures to strengthen governance and transparency
• Seeking honest, candid feedback
• Clarifying that event registration fees can be waived for clinicians who request support
• Developing materials to introduce each of our rare disorders individually to newly diagnosed individuals and families (in development)
• More mindful access to French materials especially when these communities are the target
• Continuing work to improve communication pathways with clinics and professional teams 

Registration is now open for Camp MagniPHEque 2026 taking place in Saskatchewan.

The camp is open to individuals and families affected by PKU, HCU, MSUD, and UCDs.

Website: www.canpku.org/campmagnipheque (English) www.canpcu.org/campmagnipheque (French)

We encourage clinics and healthcare professionals to share this opportunity broadly within the community.

Scholarships are available to help support attendance. CanPKU+ is always willing to waive registration fees where cost presents a barrier to participation, including for clinicians and allied healthcare professionals.

Where additional funding is available, travel scholarships may also be offered.

Please watch for distribution of the most recent CanPKU+ newsletter later this week. The newsletter will include updates following a new cleanly structured CARES format.

The CanPKU+ Clinician Hub is being developed as a dedicated and restricted space for medical professionals, researchers, clinician teams, and allied healthcare professionals supporting HCU, MSUD, PKU, UCDs, and other allied disorders across Canada.

Due to the nature of the materials that may be added to this hub, access must be password protected. This helps CanPKU+ meet compliance expectations for professional-only materials, including updates from industry partners where the information appropriate for professional teams may differ from what can be forwarded directly to patients and families.

Login will be required. To help ensure that restricted resources are only provided to appropriate professional users, we are unable to make this a public click-to-access area. Instead, eligible professionals should email tanya.chute@canpku.org or admin@canpku.org and request to be designated for clinician access.

This resource is not tied to a paid membership. CanPKU+ does offer a professional membership for $35 for those who would like to support our work, but professional access to restricted clinician resources should not be limited by financial ability.

Planned Features and Resources

• Professional Resource Library
• Videos and Recorded Webinars
• Professional Invitations and Bulletins
• Articles and Clinical Updates
• Professional Downloads and Educational Materials
• Research and Collaboration Notices
• Clinician Event Invitations
• Resource Sharing Opportunities
• Non-patient-facing professional updates shared for clinician awareness and education

This update can be shared using the webpage link below:

Email - Clinic Connect with CanPKU+ Link: www.canpku.org/clinicconnect

Who Should Receive This Information?

Please feel free to forward and share this page with anyone within your clinic, hospital, healthcare network, or support teams involved in caring for individuals affected by PKU, HCU, MSUD, UCDs, and allied inherited metabolic disorders at any stage of care.

This includes:

• Metabolic physicians
• Dietitians
• Nurses
• Genetic counsellors
• Psychologists
• Social workers
• Transition teams
• Researchers
• Clinic coordinators
• Students and trainees
• Allied healthcare professionals involved in patient support