Guide to Representing CanPKU+ at Events

A simple introduction is usually enough:

You may add your relevant role or personal connection:

O Board or operations representative.

O Staff member or volunteer.

O Patient, parent, caregiver, or family member.

O Healthcare, research, or advisory representative.

You do not need to deliver a formal organizational presentation. The objective is to begin a conversation and establish a point of contact.

C — Community

Look for opportunities to:

O Introduce CanPKU+ to families, organizations, clinicians, researchers, and industry representatives.

O Learn how other organizations connect and support their communities.

O Identify opportunities for cross-border or cross-disorder collaboration.

O Share information about Canadian programs, events, networks, and family supports.

A — Advocacy

Listen for discussions about:

O Access to treatments, formulas, medical foods, specialists, and clinical services.

O Newborn screening and diagnostic gaps.

O Emergency care and treatment protocols.

O Transition from pediatric to adult care.

O Regional differences in care, reimbursement, or health policy.

O Successful advocacy strategies that could inform Canadian work.

R — Research & Innovation

Watch for information concerning:

O Emerging treatments and clinical trials.

O Gene therapy, gene editing, RNA-based treatments, enzyme therapies, and other new technologies.

O Natural history studies, patient registries, and data collection.

O Neurocognitive, mental health, quality-of-life, and burden-of-care research.

O Adult outcomes and lifelong disease management.

O Opportunities for Canadian patient participation.

E — Education

Consider whether a speaker, clinician, researcher, or organization could contribute to:

O A CanPKU+ webinar.

O A conference or community presentation.

O A website article, interview, fact sheet, or educational resource.

O Professional education for healthcare providers.

O Bilingual or Canadian-specific educational material.

A low-pressure invitation could be:

S — Sustain

Look for relationships that may support:

O Educational grants.

O Webinar or event sponsorship.

O Family resources and patient-support initiatives.

O Research partnerships.

O Awareness campaigns.

O In-kind support, expertise, technology, or resource sharing.

Representatives are generally not expected to negotiate funding or make commitments during an event. The objective is to make an introduction, understand the organization’s interests, and ask permission for CanPKU+ to follow up.

Before the event, it is helpful to submit a list of presenters, topics and sponsors to the CEO for review to see if they can provide guidance on priority contacts. You are not expected to know this information on your first few outings. You will get more familiar the more you have exposure.

CanPKU+ may provide a list of priority speakers, researchers, companies, organizations, or community leaders. Priorities will generally fall into four categories.

Existing Strong Relationship

Thank the contact for their past support, provide a brief update, and explore whether there are new opportunities to collaborate.

Relationship Under Development

Reintroduce CanPKU+, refer to any previous conversations where appropriate, and identify a clear next step.

Known Organization, Limited Relationship

Make an introduction, learn about their current priorities, and ask whether CanPKU+ may follow up after the event.

No Existing Relationship

Focus on a friendly introduction. Success may simply mean exchanging contact information and establishing awareness of CanPKU+.

Do not feel obligated to approach every person or organization. Prioritize conversations that are relevant, comfortable, and realistic within the event schedule.

These questions can help begin a natural conversation:

O “What work are you most excited about right now?”

O “Are there developments that Canadian families should be watching?”

O “Are Canadian sites or participants expected to be involved?”

O “What educational gaps do you see for patients and families?”

O “Would you be open to presenting a future webinar for a Canadian audience?”

O “Does your organization support patient education or community initiatives?”

O “Who would be the best person for CanPKU+ to contact after the event?”

O “May I share your contact information with our team for follow-up?”

When appropriate, record:

O Name and title.

O Organization or institution.

O Email address or preferred contact method.

O Area of expertise or organizational interest.

O Relevant disorder or community.

O Possible webinar, resource, research, advocacy, or sponsorship opportunity.

O Any specific follow-up requested.

O Whether the contact gave permission to be contacted.

A photograph of a business card, exhibitor sign, program listing, or session slide may be helpful, provided photography is permitted.

Representatives May:

O Introduce CanPKU+ and describe its general work.

O Express interest in future discussions.

O Invite someone to connect with the CanPKU+ team.

O Suggest a possible webinar, resource, meeting, or collaboration.

O Share approved public information and organizational materials.

Representatives Should Not:

X Promise funding, sponsorship recognition, or project approval.

X Sign agreements or approve contracts.

X Commit CanPKU+ to a formal partnership or endorsement.

X Provide personal medical advice.

X Share confidential organizational or community information.

X Present personal opinions as official CanPKU+ policy.

When unsure, say that you would be pleased to bring the opportunity back to the CanPKU+ team.

When representing CanPKU+:

O Be welcoming, respectful, and inclusive.

O Respect different treatment choices and lived experiences.

O Avoid speaking on behalf of an entire disorder community based only on personal experience.

O Protect confidential and identifying information.

O Be transparent when you do not know an answer.

O Avoid criticizing other organizations, healthcare professionals, companies, or community members.

O Direct media, policy, legal, financial, or controversial inquiries to CanPKU+ leadership.

Personal lived experience is valuable. It should be described as your own experience unless CanPKU+ has specifically authorized you to present broader organizational findings.

Representatives may be invited to gather photographs or short updates for CanPKU+ communications.

O Follow the event’s photography and social-media rules.

O Obtain permission before sharing identifiable photographs of individuals.

O Do not photograph confidential slides or unpublished research.

O Avoid posting medical details about another person.

O Confirm that announcements are public before sharing them.

O Send useful photographs and notes to the CanPKU+ communications team.

Unless specifically assigned, representatives are not required to post live throughout the event. If you are interested in this type of engagement please chat with the CEO for further direction.

Representatives should provide a brief event report while the information is still fresh. The report does not need to be lengthy.

Include:

O Major themes or developments.

O Information that may affect Canadian patients and families.

O New or strengthened contacts.

O Possible webinar speakers or educational contributors.

O Research, clinical-trial, registry, or advocacy opportunities.

O Potential sponsors, funders, or project partners.

O Resources, presentations, or materials that should be reviewed.

O Recommended follow-up actions and responsible team members.

Business cards, contact notes, photographs, brochures, and presentation materials should be forwarded or uploaded to the appropriate CanPKU+ location.

If you were provided a budget or offered reimbursement of expenses for your event please follow 3.0 Advances and Expenses Reimbursement Policy and Procedure to ensure funds are documented correctly and paid back to you in a timely manner. The Policy and Procedures document will always be the source of true information but for a brief overview consider the following:

O Expenses should be preapproved.

O Itemized receipts are required.

O Aim to submit your reciepts within 30 days or April 30th which ever is soonest.

O Be sure the treasurer has your up to date banking information.

O Review the CanPKU+ Reimbursement Guide for more details.