Log in

Getting INvolved:

Advocacy and Awareness:

We did an email blast and asked our community to send us their "faces" so we could create and update a flyer about CanPKU+. It is important to us to use REAL faces of our community whenever we can. Check out the results to the right! 

A research group at The Hospital for Sick Children (SickKids) in Toronto is leading the development of two new reporting guidelines for pediatric clinical trials, SPIRIT-Children and CONSORT-Children, to improve transparency in the reporting of pediatric clinical trials.

They are looking for TWO GROUPS to complete a Delphi study starting January 2024. These group would be working alongside the research team in an advisory/consultation capacity, and not as research participants.

Group ONE -  family caregivers (e.g., parents, guardians) and young people living with Rare (ages 19-24)

Follow THIS LINK to get more information

Group TWO -  youth living with Rare (ages 12-18) 

Follow THIS LINK to get more information

For any questions please contact Ami (


Join the U Crew

It's all about U as an adult living with your rare.

Do you have pkU? hcU? msUd or Ucds?


Looking for support with the following?

  • Recipes and cooking ideas.
  • Help and support with the hard days.
  • Someone to help guide you down the right path.
  • Non-judgemental space to share your ups and downs.
  • Friendship from others in the same ship.
  • Someone to be accountable to in order to maintain your treatment goals
  • Receive mentoring and potentially become a future mentor?
  • Receive encouragement and surprises along the way.

Looking for more information.. Follow some of the links below to other areas of our website!

Vous cherchez plus d'informations. Suivez certains des liens ci-dessous vers d'autres zones de notre site Web !

(if the same statement shows twice it is because your browser is translating)

Certaines sections peuvent être traduites par Google. Nous nous excusons pour toute inexactitude. Nous avons besoin de plus de traducteurs. Si intéressé contactez

Can we accept donations? ABSOLUTELY.  CanPKU+ relies on donations to help us achieve our goals for the community. Please click the image to the right to make a donation today!

Thank you in advance for consider CanPKU+ as a worthy organization to receive your donation.

Please note: As we are not a charity, we are unable to issue tax receipts for any donation made.

Make a Donation

Events happening soon:

Future Events:

Upcoming events

Canadian PKU and Allied Disorders Inc. is a non-profit association of volunteers, first organized in the Spring of 2008 based in Toronto, Ontario. We are dedicated to providing accurate news, information and support to families and professionals dealing with phenylketonuria (PKU) and similar, rare, inherited metabolic disorders. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families.

Subscribe to our newsletter

Subscription form

* Mandatory fields
*First name - Prénom
*Last name - Nom de famille
*Primary Email/Courriel

Other Information (optional) - Autres informations (facultatif)

Preferred Language/langue préférée
English- Choose the Emails you will receive
Français - Choisissez les e-mails que vous souhaitez recevoir

We wish to thank all of those who make CanPKU work!

There are many volunteers working to help this community. We thank all of them for their time and efforts!

The French content of this web site is generated by automated translation and is provided for information purposes only. Consequently, CanPKU cannot be held responsible for the accuracy, completeness and quality of the information presented herein in French, nor be held accountable for any use made of it.

Avis de non-responsabilité
Le contenu français de ce site Web est produit par traduction automatique et fourni à titre indicatif uniquement. Par conséquent, PCU Canada ne garantit pas l'exactitude, l'intégralité et la qualité du contenu des informations présentées en français dans ce site, et ne peut être tenue responsable de l'usage qu'on en fait.

Powered by Wild Apricot Membership Software