Program Areas
Explore our core program areas below to find tools, connections, and opportunities that fit your journey.
Community Supports
New to PKU, MSUD, UCDs, or HCU?
We provide families and individuals with introductory resources, sample materials, and information to help navigate life after diagnosis.
We also offer ongoing member supports, including mentorship, educational guidance, and community connections.
This includes programs such as:
Applying for the Disability Tax Credit (CIPH) can feel overwhelming — but you don’t have to do it alone. We provide general guidelines for everyone, and offer members personalized support with examples, templates, and advice from those who’ve successfully applied.
Our Drive to Thrive initiative helps adults living with PKU reconnect with care teams and return to treatment after time away. We provide information, encouragement, and peer support to make the transition back to care easier and more empowering.
Through the generosity of donors, CanPKU+ members can receive financial assistance to attend educational days and advocacy events. We aim to ensure that participation and access are never limited by distance or cost.
Advocacy – Education & Action
CanPKU+ leads national and provincial efforts to ensure every person living with a rare metabolic disorder has access to care, treatments, and supports. Our advocacy work includes public awareness, policy engagement, and community action opportunities for you to get involved.
Research
We believe that research leads to better futures. Our Research and Registry programs connect patients and families with opportunities to participate in clinical studies, contribute to data collection, and shape the direction of future treatments.
Events
From our annual Building Bridges conference to regional meetups and clinic events, CanPKU+ provides spaces for learning, networking, and support. Join us in person or online to hear expert presentations, connect with peers, and celebrate progress together.
Clinic Engagement & Professional Partnerships
CanPKU+ works closely with metabolic clinics, healthcare professionals,