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Canadian PKU and Allied Disorders (CanPKU+)

CanPKU+ supports individuals with HCU, MSUD,  PKU, UCD and other allied disorders through Community, Advocacy, Research, Educattion and Support.

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Advocacy Pillar&nbsp;Advocacy is about ensuring the voices of patients, families, and caregivers are heard where it matters most &mdash; with policymakers, regulators, and healthcare decision-makers. Contributions to advocacy help CanPKU+ to:<ul data-end="2003" data-start="1578" fr-original-style="" style="box-sizing: inherit;"><li data-end="1729" data-start="1578" fr-original-style="" style="box-sizing: inherit;">Engage with Health Canada and other regulatory agencies to support approval and access to treatments, such as the recent work on Sephience for PKU.</li><li data-end="1844" data-start="1730" fr-original-style="" style="box-sizing: inherit;">Mobilize the community to provide input on drug submissions, healthcare policies, and patient access programs.</li><li data-end="2003" data-start="1845" fr-original-style="" style="box-sizing: inherit;">Raise awareness of challenges faced by individuals with PKU, HCU, MSUD, and UCDs, ensuring that decisions affecting care are informed by real experiences.</li></ul>By supporting advocacy, you help shape a healthcare system that prioritizes rare disease needs and improves quality of life for our community.

Advocacy Pillar Advocacy is about ensuring the voices of patients, families, and caregivers are heard where it matters most — with policymakers, regulators, and healthcare decision-makers. Contributions to advocacy help CanPKU+ to:Engage with Health Canada and other regulatory agencies to support approval and access to treatments, such as the recent work on Sephience for PKU.Mobilize the community to provide input on drug submissions, healthcare policies, and patient access programs.Raise awareness of challenges faced by individuals with PKU, HCU, MSUD, and UCDs, ensuring that decisions affecting care are informed by real experiences.By supporting advocacy, you help shape a healthcare system that prioritizes rare disease needs and improves quality of life for our community.

Donate to the Advocacy Pillar

PCU et Maladies Apparentees Canada Inc. (CanPCU+) est très reconnaissant de toutes les donations reçues de notre communauté. Elles nous aident à pouvoir continuer à offrir des programmes, de l'éducation, du soutien et de la défense des droits pour les personnes atteintes de HCU, PCU, MSUD, UCDs et de troubles rares au Canada.Les donations aident également à garantir que nous disposons de fonds pour continuer à offrir des bourses de voyage à autant d'individus et de membres de familles que possible, afin de pouvoir assister à nos programmes éducatifs en personne - où ils peuvent non seulement en apprendre davantage sur la vie avec leur trouble rare, mais vraiment ressentir la valeur que cette incroyable communauté apporte à chacun.Nous vous remercions de tout cœur d’envisager CanPCU+ lorsque vous contribuez à notre communauté.** CanPCU+ est actuellement désigné comme une organisation à but non lucratif. Nous n'avons pas le statut d'organisme de charité et, à ce titre, nous ne sommes pas en mesure de fournir de reçus fiscaux. **

PCU et Maladies Apparentees Canada Inc. (CanPCU+) est très reconnaissant de toutes les donations reçues de notre communauté. Elles nous aident à pouvoir continuer à offrir des programmes, de l'éducation, du soutien et de la défense des droits pour les personnes atteintes de HCU, PCU, MSUD, UCDs et de troubles rares au Canada.Les donations aident également à garantir que nous disposons de fonds pour continuer à offrir des bourses de voyage à autant d'individus et de membres de familles que possible, afin de pouvoir assister à nos programmes éducatifs en personne - où ils peuvent non seulement en apprendre davantage sur la vie avec leur trouble rare, mais vraiment ressentir la valeur que cette incroyable communauté apporte à chacun.Nous vous remercions de tout cœur d’envisager CanPCU+ lorsque vous contribuez à notre communauté.** CanPCU+ est actuellement désigné comme une organisation à but non lucratif. Nous n'avons pas le statut d'organisme de charité et, à ce titre, nous ne sommes pas en mesure de fournir de reçus fiscaux. **

Support &amp; Community PillarThe sense of connection and belonging is especially important for families affected by rare disorders. CanPKU+ fosters a supportive community through programs and initiatives that:<ul data-end="3590" data-start="3164" fr-original-style="" style="box-sizing: inherit;"><li data-end="3253" data-start="3164" fr-original-style="" style="box-sizing: inherit;">Provide peer-to-peer support networks, mentorship opportunities, and family meet-ups.</li><li data-end="3356" data-start="3254" fr-original-style="" style="box-sizing: inherit;">Offer emotional, social, and practical guidance for navigating life with PKU, HCU, MSUD, and UCDs.</li><li data-end="3468" data-start="3357" fr-original-style="" style="box-sizing: inherit;">Celebrate milestones and achievements, and honor individuals in the community through campaigns and events.</li><li data-end="3590" data-start="3469" fr-original-style="" style="box-sizing: inherit;">Create spaces for families to share experiences, ask questions, and find encouragement in a network of understanding.</li><li data-end="3590" data-start="3469" fr-original-style="" style="box-sizing: inherit;">Offering programs to connect such as events and education.</li><li data-end="3590" data-start="3469" fr-original-style="" style="box-sizing: inherit;">Provide welcome kits to those who are newly diagnosed and returning to care&quot;</li></ul>Donations to support and community programs directly enhance the well-being of patients and families, helping them feel connected, heard, and supported every step of the way. Welcome kits are distributed via Metabolic Clinics who treat those with our disorders. Ask you clinic for yours!

Support & Community PillarThe sense of connection and belonging is especially important for families affected by rare disorders. CanPKU+ fosters a supportive community through programs and initiatives that:Provide peer-to-peer support networks, mentorship opportunities, and family meet-ups.Offer emotional, social, and practical guidance for navigating life with PKU, HCU, MSUD, and UCDs.Celebrate milestones and achievements, and honor individuals in the community through campaigns and events.Create spaces for families to share experiences, ask questions, and find encouragement in a network of understanding.Offering programs to connect such as events and education.Provide welcome kits to those who are newly diagnosed and returning to care"Donations to support and community programs directly enhance the well-being of patients and families, helping them feel connected, heard, and supported every step of the way.Welcome kits are distributed via Metabolic Clinics who treat those with our disorders. Ask you clinic for yours!

Donate to the Support and Community Pillar

Research Pillar -&nbsp;While CanPKU+ does not conduct clinical research ourselves, we play a crucial role in supporting and advancing scientific progress for PKU, HCU, MSUD, and UCDs. We contribute by:<ul data-end="1056" data-start="637" fr-original-style="" style="box-sizing: inherit;"><li data-end="727" data-start="637" fr-original-style="" style="box-sizing: inherit;">Supporting patient registries and databases that track health outcomes and treatments.</li><li data-end="727" data-start="637" fr-original-style="" style="box-sizing: inherit;">Creating and hosting the &nbsp;Canadian PKU Registry (currently for pediatric patients but expanding when funding allows to include adults)</li><li data-end="835" data-start="728" fr-original-style="" style="box-sizing: inherit;">Participating in research advisory panels, providing the patient and family perspective to researchers.&nbsp;</li><li data-end="835" data-start="728" fr-original-style="" style="box-sizing: inherit;">Participating and education about Family Engagement in Research</li><li data-end="945" data-start="836" fr-original-style="" style="box-sizing: inherit;">Helping provide some Canadian dollars thanks to this fundraising to help fun programs like HCU Network America&rsquo;s Race for Research to accelerate discovery of new therapies.</li><li data-end="1056" data-start="946" fr-original-style="" style="box-sizing: inherit;">Sharing data and insights with clinical partners to help improve care strategies and treatment approaches.</li><li data-end="1056" data-start="946" fr-original-style="" style="box-sizing: inherit;">Bringing Research opportunities to our community (education about trials etc)</li></ul>Donations to this pillar empower the rare disease community by helping researchers, clinicians, and organizations access the information and resources they need &mdash; and can also be made in honor of someone you care about, linking their legacy to advancing medical knowledge.

Research Pillar - While CanPKU+ does not conduct clinical research ourselves, we play a crucial role in supporting and advancing scientific progress for PKU, HCU, MSUD, and UCDs. We contribute by:Supporting patient registries and databases that track health outcomes and treatments.Creating and hosting the Canadian PKU Registry (currently for pediatric patients but expanding when funding allows to include adults)Participating in research advisory panels, providing the patient and family perspective to researchers. Participating and education about Family Engagement in ResearchHelping provide some Canadian dollars thanks to this fundraising to help fun programs like HCU Network America’s Race for Research to accelerate discovery of new therapies.Sharing data and insights with clinical partners to help improve care strategies and treatment approaches.Bringing Research opportunities to our community (education about trials etc)Donations to this pillar empower the rare disease community by helping researchers, clinicians, and organizations access the information and resources they need — and can also be made in honor of someone you care about, linking their legacy to advancing medical knowledge.

Donate to the Research Pillar

Building Bridges 2026 (Construire des Ponts 2026)Montreal, QC | June 5&ndash;7, 2026Version fran&ccedil;aiseConstruire des Ponts 2026 est une conf&eacute;rence nationale ax&eacute;e sur les familles, organis&eacute;e par CanPKU+, r&eacute;unissant les personnes vivant avec des maladies m&eacute;taboliques h&eacute;r&eacute;ditaires, leurs familles, ainsi que des cliniciens, chercheurs et partenaires de l&rsquo;industrie.Ancr&eacute;e dans les piliers CanPKU+ CARES &mdash; Communaut&eacute;, Action collective, Recherche, &Eacute;ducation et Soutien &mdash; cette fin de semaine vise &agrave; renforcer les liens, approfondir les connaissances et outiller les familles partout au Canada.Vendredi 5 juinLa conf&eacute;rence d&eacute;bute vendredi apr&egrave;s-midi avec l&rsquo;inscription et un accueil chaleureux, offrant un moment pour renouer avec la communaut&eacute; et accueillir les nouveaux participants. La soir&eacute;e mettra l&rsquo;accent sur le rapprochement et la cr&eacute;ation d&rsquo;un esprit de collaboration pour la fin de semaine.Samedi 6 juinLe samedi constitue la journ&eacute;e compl&egrave;te de programmation, centr&eacute;e sur les familles et l&rsquo;&eacute;ducation. L&rsquo;horaire comprendra des s&eacute;ances pl&eacute;ni&egrave;res, des ateliers sp&eacute;cifiques par maladie (PCU, HCU, MSUD, TCU), une programmation jeunesse ainsi que des occasions d&rsquo;&eacute;changer avec des cliniciens, chercheurs et partenaires de l&rsquo;industrie*.Que vous soyez nouvellement diagnostiqu&eacute;, en p&eacute;riode scolaire, en transition vers les soins adultes ou que vous souteniez un proche, les sessions seront con&ccedil;ues pour offrir des informations pratiques, des exp&eacute;riences partag&eacute;es et un dialogue constructif.Dimanche 7 juinLa matin&eacute;e du dimanche proposera des s&eacute;ances &eacute;ducatives suppl&eacute;mentaires et une discussion communautaire, se terminant &agrave; midi. L&rsquo;horaire permettra aux cliniciens et chercheurs de se rendre au Symposium Garrod &agrave; Bromont, QC, qui d&eacute;bute plus tard dans la journ&eacute;e, renfor&ccedil;ant ainsi le lien entre la communaut&eacute; et la recherche scientifique.Soutien aux famillesAfin de soutenir les parents et les aidants, un service de garde supervis&eacute; sera offert sur place pour les enfants de 12 ans et moins (aucune nourriture ne sera servie dans la salle de garde). Une programmation d&eacute;di&eacute;e aux adolescents sera &eacute;galement propos&eacute;e.Inscription et accessibilit&eacute;Cet &eacute;v&eacute;nement s&rsquo;adresse aux membres de la communaut&eacute; vivant avec une maladie rare, incluant les personnes diagnostiqu&eacute;es, leurs proches aidants et leurs familles.Chaque billet est individuel et requis pour participer.Des bourses de d&eacute;placement sont disponibles** afin de favoriser l&rsquo;accessibilit&eacute;. Les d&eacute;tails seront communiqu&eacute;s &agrave; l&rsquo;ouverture des inscriptions.D&rsquo;autres informations concernant la programmation, les conf&eacute;renciers et les activit&eacute;s sp&eacute;ciales seront annonc&eacute;es prochainement. Restez &agrave; l&rsquo;aff&ucirc;t alors que la planification se poursuit.* Tel que permis par la loi canadienne** Selon les fonds disponibles English VersionBuilding Bridges 2026 is a national, family-focused conference hosted by CanPKU+, bringing together individuals and families living with inherited metabolic disorders alongside clinicians, researchers, and industry partners.Grounded in our CanPKU+ CARES pillars &mdash; Community, Advocacy, Research, Education, and Support &mdash; the weekend is designed to strengthen connections, deepen knowledge, and empower families across Canada.Friday, June 5We begin Friday afternoon with registration and a warm welcome, creating space for families to reconnect and for new attendees to feel at home. The evening will focus on community-building and setting the tone for a meaningful weekend together.Saturday, June 6Saturday is our full conference day, centered on families and education. The program will feature plenary sessions, disorder-specific breakout discussions (PKU, HCU, MSUD, UCD), youth programming, and interactive opportunities to engage with clinicians, researchers, and industry partners*.Whether you are newly diagnosed, navigating school years, transitioning to adult care, or supporting a loved one, sessions will be designed to provide practical information, shared experiences, and supportive dialogue.Sunday, June 7Sunday morning will continue with educational sessions and a community-focused discussion, concluding at midday. The timing allows clinicians and researchers to transition to the Garrod Symposium in Bromont, QC, beginning later that day, reinforcing the bridge between community and scientific exchange.Supporting FamiliesTo support caregivers and parents, supervised onsite childcare will be available for children 12 and under (no food served in the childcare space). Dedicated teen programming will also be offered to ensure youth feel included and engaged.Registration &amp; AccessThis event is intended for members of the rare disease community, including individuals diagnosed, caregivers, and family members.Each ticket is per person and required for attendance.Travel Scholarships are available** to help ensure access for families who require assistance. Details will be shared as registration opens.More information on programming, speakers, and special events will be announced soon. Stay tuned as we continue planning.* As permitted under Canadian law** Based on available funding

Canadian PKU and Allied Disorders (CanPKU+)

Canadian PKU and Allied Disorders (CanPKU+)

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