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Community, Advocacy, Research, Education

Rare Awareness Radio

Rare Awareness Radio is a storytelling and education platform dedicated to elevating the voices of individuals and families affected by rare disease. Through interviews and narrative features, the program explores personal experience and the broader systems that influence care, research, access, and equity.

Who they are and why this project matters

Rare Awareness Radio is a joint venture with Principled Research Resources, L3C, a partnership rooted in the shared conviction that research and storytelling together can move awareness into action.

This project helps bring forward the experiences, barriers, breakthroughs, and insights that often go unheard in rare disease. It is designed to support community education, strengthen advocacy, and help more people understand the realities families face when navigating diagnosis, care, treatment access, and research.

We are also deeply grateful that Rare Awareness Radio and Principled Research Resources are supporting nonprofit organizations through this project at no cost, helping mission-driven groups share important stories and educational conversations with a wider audience.

There is something especially meaningful about building this work alongside a team whose name includes "principled" for a reason.

Find and follow Rare Awareness Radio

Press Release Highlights

Rare Awareness Radio and CanPKU+ launched a six-episode podcast series beginning March 8, 2026, spotlighting the realities of rare disease in Canada. The series explores diagnosis delays, access to treatment, research participation, and the daily realities of living with rare disease across provinces.

About the CanPKU+ podcast series

Featuring caregivers, clinicians, researchers, advocates, and policy leaders, this five-episode series explores what families experience on the ground and how health systems, research infrastructure, and policy decisions shape those outcomes across Canada.

The series is designed for families, clinicians, researchers, policy leaders, and industry stakeholders committed to improving rare disease outcomes in Canada.

Across episodes, the conversations examine what is working, where gaps remain, and how coordinated national action, from newborn screening to treatment access to research integration, can improve care and long-term outcomes.


The episodes will be released approximately every two weeks. Stay tuned for updates. When the microphones  below update to related images - it indicates that episode is live.

1. Supporting Those Who Live With Rare: Our Goals, Their Lives

Tanya Chute Nagy and Nicole Pallone, caregivers and executive members of CanPKU+, discuss the emotional, logistical, and financial pressures families face and how community organizations can better support them while also advancing policy change.

This conversation explores the practical realities of rare disease family life and the role nonprofit organizations play in turning lived experience into support, advocacy, and system improvement.

Related links
2. Newborn Screening and Homocystinuria: Accessing Diagnosis

Melanie Colter, HCU Representative on the CanPKU+ Board, shares her family's experience with delayed diagnosis and explains why consistent newborn screening programs across provinces are critical to improving health outcomes.

This episode highlights how early identification can change the course of care and why unequal screening practices can leave families without answers during critical windows of time.

Related links
3. Access to Treatments in Canada: Policy, Pathways, and Gaps
Rare Awareness Radio episode image

John Adams, Co-founder and Advocacy Advisor to CanPKU+, outlines how treatment access decisions are made in Canada, where delays occur, and how review processes could better reflect the urgency felt by families.

This episode helps listeners understand the gap between scientific progress and real-world access, and why advocacy remains essential long after a treatment is developed.

Related links
Rare Awareness Radio episode image
4. Patient Partners in Research: CanPKU+ as a Model for Engagement

Maureen Smith, long-time patient advocate, describes how CanPKU+ collaborates with research teams to help ensure studies reflect community priorities and uphold ethical, meaningful partnership.

This topic explores what strong patient engagement looks like in practice and why research is better when people with lived experience help shape it.

Related links
5. Expanding the PKU Registry: Including Adults in National Data Efforts

Dr. Beth Potter, Professor at the University of Ottawa and leader in pan-Canadian rare disease research networks, discusses the evolution of PKU registries, including INFORM RARE, and the importance of expanding adult data collection.

Better national data can strengthen long-term clinical and real-world evidence for care, policy, and therapeutic development, especially as more people with PKU age into adulthood.

Related links
6. The Challenges Facing Nonprofits: People, Funding, and Information

Nicole Pallone and  Tanya Chute Nagy, come together again. This podcast will address the operational realities nonprofits face as they work to meet growing demand with limited resources.

This episode explains why sustainable funding, trusted information, and strong organizational capacity are essential to advancing rare disease advocacy and supporting families well.

Related links

Why CanPKU+ is sharing this project

Rare Awareness Radio offers a valuable space to explore the realities of living with rare disease in Canada through honest conversations, lived experience, and practical insight.

For CanPKU+, this series reflects many of the issues our community lives every day: diagnosis, access, policy, research, advocacy, and the need for strong, informed support systems.

We are proud to help share this work and to support efforts that bring more visibility, more understanding, and more momentum to rare disease communities across Canada.

Media and contact information

For CanPKU+
Tanya Chute Nagy
Tanya.Chute@canpku.org
canpku.org

For Rare Awareness Radio / Principled Research Resources
Scott Milligan, Managing Director
info@principledresources.com
rareawarenessradio.org
principledresources.com