Tanya Chute Nagy provides strategic and operational leadership for CanPKU+, a national non-profit organization supporting individuals and families affected by phenylketonuria (PKU), homocystinuria (HCU), maple syrup urine disease (MSUD), urea cycle disorders (UCDs), and allied inherited metabolic conditions.
Her work combines lived experience as a caregiver, patient partnership in research, national community programming, health system advocacy, registry development, organizational governance, and stakeholder collaboration.
She works to connect the priorities of people living with rare metabolic disorders and their families with researchers, clinicians, decision-makers, and organizations involved in improving care and quality of life.
Leadership and Governance
President and Chief Executive Officer, CanPKU+
July 2025 to present | Canada | Remote
Provides strategic and operational leadership in collaboration with the Board of Directors, supporting organizational governance, planning, sustainability, advocacy, and community priorities.
Oversees national programs, communications, partnerships, membership services, sponsor relationships, and organizational development.
Represents CanPKU+ in research, policy, healthcare, and community settings concerning inherited metabolic disorders.
Supports collaboration among patient organizations, researchers, clinicians, industry representatives, and government stakeholders.
Maintains operational continuity while advancing the organization's national role in patient advocacy, research partnership, and community education.
Vice President, Chief Operating Officer, and Board Member, CanPKU+
January 2017 to June 2025
Directed substantial day-to-day operations, program coordination, fundraising, sponsorship, and member communications.
Led the selection and implementation of a new website and data-management platform, including rebuilding the organization's public website.
Developed and maintained educational and community resources, including a quarterly newsletter.
Initiated fundraising activities, including Pins4PKU.
Supported national clinic relationships and the development of resources for families and adults returning to metabolic care.
Secretary, CanPKU+
June 2013 to January 2017
Coordinated governance documentation, correspondence, meeting records, and annual general meeting materials.
Supported community events, education, and volunteer engagement.
Family Engagement Research Partner, MommaBearHeart
January 2022 to present
Collaborates with research teams to incorporate family and caregiver perspectives into the design, implementation, and communication of research.
Supports meaningful engagement of people with lived experience throughout research processes.
Contributes to knowledge translation, research accessibility, and partnership practices that recognize families as contributors to research.
CIHR Project Grant, Co-Investigator
October 2026 to September 2030
Project: Developing and implementing a core outcome set for adolescents and adults with phenylketonuria.
Funding: Canadian Institutes of Health Research (CIHR), Project Grant.
Amount awarded: $539,325.
Contributes as a co-investigator to research intended to establish meaningful and consistent outcomes for PKU research involving adolescents and adults, including patient and caregiver perspectives.
Principal Investigators: Potter BK, Mitchell JJ, Nimmo G, Pender A, Smith M.
Co-Investigators: Adams J, Butcher N, Chute Nagy T, Fuhr R, Chakraborty P, Christ S, Lacaze-Masmonteil T, McBride K, Offringa M, Pallone N, Parker M, Potter M, Stockler S.
Canadian Metabolic Patient Registries Steering Committee, Co-Chair
2023 to present | Associated with MommaBearHeart
Provides patient-oriented leadership and direction for Canadian metabolic patient registry development.
Works alongside patients, caregivers, healthcare professionals, researchers, methodologists, and ethicists.
Supports registry decision-making that considers patient priorities, research usefulness, and appropriate governance.
Canadian PKU Patient Registry
2021 to present | CanPKU+ and research collaborators
Supports the development and community engagement of Canadian PKU registry initiatives.
Contributes to collaboration involving CanPKU+, INFORM RARE, the CHEO Research Institute, and NORD IAMRARE.
Promotes the importance of patient-informed data collection and longitudinal research.
EURORDIS Mental Health and Wellbeing Partnership Network
April 2024 to present | Population Needs and Advocacy Working Group
Contributes to international collaboration examining unmet mental health and wellbeing needs among people living with rare diseases.
Supports research and communication activities involving surveys, literature reviews, listening events, and community knowledge sharing.
Experiences, Impact, and Enablers of Involving Young People and Family Caregivers in Developing Reporting Guidelines for Paediatric Randomised Trials: A Case Study
Co-author | Research Involvement and Engagement | 2025
Contributed to a peer-reviewed case study examining the involvement of young people and family caregivers in developing pediatric clinical trial reporting guidelines.
SPIRIT-C and CONSORT-C Pediatric Reporting Guidelines
Family caregiver contributor / Co-author | 2026
Participated in work to improve the transparency, relevance, completeness, and usefulness of reporting for pediatric randomized clinical trials and their protocols.
Parent advocate and patient partner | 2022 to 2023
Participated in developing a plain-language communication tool to make pediatric clinical trial results more accessible to children, young people, and families.
Co-developed a knowledge translation framework to support family partners and researchers in navigating challenging conversations and sustaining respectful, effective collaboration.
The French adaptation, Rester CALME en Partenariat, supports accessibility across language communities.
National Educational Events and Community Conferences
CanPKU+ | National programming
Coordinates educational events, community gatherings, and opportunities for families and individuals living with inherited metabolic disorders to connect.
Collaborates with healthcare professionals, researchers, industry partners, volunteers, and individuals with lived experience.
Supports in-person, virtual, and bilingual educational programming.
Previously held the dedicated Event and Camp Coordinator role from January 2018 to June 2025, with continued program oversight through executive leadership.
Camp MagniPHEque
September 2017 to present
Supports an inclusive camp experience for people living with PKU and allied disorders, their families, and community partners. The program brings together recreational activities, peer support, educational opportunities, and accommodations for specialized dietary requirements.
Drive to Thrive
Created an initiative focused on reconnecting adults with PKU who had become disengaged from specialist care or had previously been taken off treatment.
Starter Kits and Restart Kits
Oversaw the development and national distribution of educational and support resources for newly diagnosed infants and adults returning to treatment, working with metabolic clinics and sponsors.
Avery's Ride for PKU
2013 to 2014
Supported a cross-Canada cycling initiative that increased awareness of PKU, encouraged community participation, advocated for treatment access, and raised more than $63,000 for CanPKU+.
Supports patient and community participation in Canadian health technology assessment, drug reimbursement, and treatment access processes.
Contributes to CanPKU+ submissions and feedback involving CDA-AMC, INESSS, and provincial reimbursement discussions.
Supports community engagement concerning access to PKU treatments, including Sephience, and emerging therapies for allied inherited metabolic disorders.
Works with patient advocates, clinicians, researchers, and partner organizations to identify access challenges and communicate community priorities.
Newborn Screening and Early Diagnosis
Advocates for equitable newborn screening access and early identification of inherited metabolic disorders across Canadian jurisdictions.
Supports policy discussions concerning screening gaps, consistency of programs, and opportunities for improvement.
Disability Benefits and Family Supports
Supports education and advocacy concerning the Disability Tax Credit, disability benefits, and related supports.
Contributes to improving the accessibility of information and resources for individuals and families navigating complex administrative processes.
Patient-Centred Policy and Community Representation
Works to ensure lived experience is represented in policy, reimbursement, and research discussions.
Promotes equitable access to therapies, metabolic formula, low-protein medical foods, specialized care, and educational resources.
Supports advocacy across PKU, HCU, MSUD, UCDs, and allied inherited metabolic disorders.
Leisure and Recreational Activities | 1994 to 1996
Dean's List. Studies in recreation and community programming, supporting skills in event planning, group engagement, and recreational program development.
Girl Guides of Canada
Volunteer Youth Leader | 1994 to 1998
Led youth activities and camping programs, supporting community participation, volunteer coordination, teamwork, and experiential learning.
McMaster University Continuing Education | Certificate of Completion | December 2024
Completed a 30-hour educational program focused on meaningful collaboration between researchers and family partners in child health and neurodevelopmental research.
Patient-oriented and family-engaged research practices
Research team roles and responsibilities
Research ethics and partnership development
Communication, implementation, and evaluation
Knowledge translation and collaborative problem-solving
