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Networking

Welcome to CanPKU+ Networking. This is our refreshed approach to connection and community. Formerly known as Cafe Chats, these gatherings are now organized into Networks so people can connect with others who share similar life stages, responsibilities, and experiences.

Choose your Network

Parents Network

For parents and caregivers supporting a child or youth living with PKU, HCU, MSUD, UCDs, or other allied metabolic conditions.

Daily routines, school planning, and navigating appointments
Food and formula strategies, travel tips, and community resources
Supportive peer connection and shared problem-solving

Adults Network

For adults living with PKU, HCU, MSUD, UCDs, or other allied disorders. This space centers lived experience, independence, and long-term wellbeing.

Work, relationships, and self-advocacy
Transitioning care, mental load, and staying on track
Practical tools and peer-to-peer encouragement

Teens Network

For teens who want a place to connect with other teens who get it. This network focuses on belonging, confidence, and real-life challenges.

School, friends, sports, and social events
Food, formula, and day-to-day independence
Peer connection in a respectful, youth-centered space

Rare Individuals Network

For individuals living with rare metabolic disorders, including those who may not see themselves reflected in larger groups. This network is built for connection and belonging.

Shared experiences across rare conditions
Finding support, resources, and community understanding
Connection beyond diagnosis and geography

How Networking works

Pick a Network that matches your life stage or experience.
Join a session that fits your schedule. Each session has a simple theme to help spark connection.
Meet people in a supportive environment with light facilitation to keep things welcoming and on track.
Stay connected through future sessions and community follow-ups when available.

These sessions are designed for connection, not random call-in chat. You can participate as much or as little as you want. Listening-only is always welcome.

Upcoming sessions

We post upcoming Networking sessions on our Events calendar. Choose a Network above to learn what to expect, then register for the next date.

View Events Calendar Contact Us

Network details

Parents Network

Who it is for: Parents and caregivers.

Typical topics: routines, school and childcare, travel, clinic visits, low-protein living, community supports.

What to expect: A welcoming group with light facilitation, a simple theme, and time for questions and sharing.

Adults Network

Who it is for: Adults living with PKU, HCU, MSUD, UCDs, and allied disorders.

Typical topics: self-advocacy, work and routines, relationships, transitioning care, staying motivated.

What to expect: Peer connection, practical strategies, and a respectful space where lived experience leads.

Teens Network

Who it is for: Teens.

Typical topics: school, sports, parties, travel, confidence, and independence.

What to expect: A youth-centered space focused on belonging and connection. Listening-only is welcome.

Note: We aim to keep this space age-appropriate and supportive.

Rare Individuals Network

Who it is for: Individuals living with rare metabolic disorders, including those outside the most common groups.

Typical topics: finding community, navigating resources, living with rarity, connection across diagnoses.

What to expect: A welcoming space designed to reduce isolation and build supportive connections.

Community guidelines

Be kind, respectful, and curious.
Share only what you are comfortable sharing.
No medical advice. Personal experiences are welcome. Treatment decisions belong with your care team.
Confidentiality matters. Please do not share other participants’ stories outside the group.