Are you looking for downloadable materials 

If yes, Click here


Click the disorder below for general information on each.

PKU

MSUD


Be sure to check out our PHOTO ALBUMS 

ONLINE EDUCATION AND EVENTS

CanPKU looks to bring you online education and events from ourselves as well as our sponsors and affiliates. If we think it may be of interest to you based on a disorder you may live with or know someone who lives with, we will post it here! Check out the calendar of events below to register!

From time to time we will also post other types of seminars that may be of interest, but are not directly linked to PKU and other Allied Disorders. You may find these on our Facebook Page.

IN PERSON EDUCATION AND EVENTS

Where possible, Can PKU also holds one day regional  events which include education, socialization and more! We bring in guest speakers, serve a snack or meal, and invite members of the community to gather and learn from each other. Check out a couple Youtube videos where some of our attendees discuss why they like to attend these events. (Sorry, we know both videos start out with the same dad speaking, but the next two clips on each video are different people)


CanPKU has been fortunate to have been able to hold an annual camp in two different locations so far. In 2019 we ran both locations in the same year! From that year we made a video showcasing some of the events at camp. Please see the clip below for the video. (Offered with English or French Captions.)

Stay tuned for our next planned camp in 2022!

Francais

Don't let funds get in the way of attending our events. If you need help, please reach out!

Upcoming events

Upcoming events

    • 2022-02-02
    • 2023-02-28
    • USA
    Register


    • 2022-10-20
    • 7:00 PM - 9:00 PM
    • Virtual
    Register
    ** If you are receiving this and are not an adult with PKU, please reply and let us know your connection to PKU. We can then edit your profile so you get the correct emails.**

    Topic: Adult Support Cafe (Group) 

    Join our Zoom Meeting to meet other like minded PKU and MSUD Adults.

    Children with allied disorders and parents of children are asked to NOT register/attend this event.

    This event is being offered in English.


    • 2022-11-12
    • 3:00 PM - 9:00 PM
    • Virtual
    Register

    ** If you are receiving this and are not an adult with a rare metabolic disorder (PKU, MSUD, etc), please reply and let us know your connection to rare. We can then edit your profile so you get the correct emails.**

    Topic: Adult Support Cafe (Group) 

    Join our Zoom Meeting to meet other like minded Adults who have a rare metabolic disorder.

    Children with allied disorders and parents of children are asked to NOT register/attend this event.

    This event is being offered in English.


    • 2022-11-14
    • 7:00 PM - 9:00 PM
    • Virtual
    Register

    ** If you are receiving this and are not a parent of a child, teen or adult with a rare metabolic disorder (PKU, MSUD, etc), please reply and let us know your connection to rare. We can then edit your profile so you get the correct emails.**

    Topic: Parent Support Cafe (Group) 

    Join our Zoom Meeting to meet other parents who have a child, teen or adult with a rare metabolic disorder.

    This event is being offered in English.


    • 2022-11-30
    • 7:00 PM - 9:00 PM
    • Virtual
    Register

    ** If you are receiving this and are not an adult or teen with a rare metabolic disorder (PKU, MSUD, etc), please reply and let us know your connection to rare. We can then edit your profile so you get the correct emails.**

    Topic: Adult/Teen Support Cafe (Group) 

    Join our Zoom Meeting to meet other like minded Adults and Teens who have a rare metabolic disorder.

    Children with allied disorders and parents of children are asked to NOT register/attend this event.

    This event is being offered in English.


    • 2022-12-03
    • 2:00 PM - 9:00 PM
    • Virtual
    Register

    ** If you are receiving this and are not an adult or teen with a rare metabolic disorder (PKU, MSUD, etc), please reply and let us know your connection to rare. We can then edit your profile so you get the correct emails.**

    Topic: Adult/Teen Support Cafe (Group) 

    Join our Zoom Meeting to meet other like minded Adults and Teens who have a rare metabolic disorder.

    *** PLEASE NOTE *** This will be our last Zoom event - we will move to Google Meets in 2023!

    Children with allied disorders and parents of children are asked to NOT register/attend this event.

    This event is being offered in English.


    • 2022-12-08
    • 7:00 PM - 9:00 PM
    • Virtual
    Register

    ** If you are receiving this and are not a parent of a child, teen or adult with a rare metabolic disorder (PKU, MSUD, etc), please reply and let us know your connection to rare. We can then edit your profile so you get the correct emails.**

    Topic: Parent Support Cafe (Group) 

    Join our Zoom Meeting to meet other parents who have a child, teen or adult with a rare metabolic disorder.

    *** PLEASE NOTE *** This will be our last Zoom event - we will move to Google Meets in 2023!

    This event is being offered in English.


    • 2022-12-14
    • 7:00 PM - 9:00 PM
    • Virtual
    Register

    ** If you are receiving this and are not an adult with a rare metabolic disorder (PKU, MSUD, etc), please reply and let us know your connection to rare. We can then edit your profile so you get the correct emails.**

    Topic: Adult Support Cafe (Group) 

    Join our Zoom Meeting to meet other like minded Adults who have a rare metabolic disorder.

    *** PLEASE NOTE *** This will be our last Zoom event - we will move to Google Meets in 2023!

    Children with allied disorders and parents of children are asked to NOT register/attend this event.

    This event is being offered in English.


    • 2023-05-07
    • 9:30 AM - 4:30 PM
    • Université Laval la salle ADJ-2320 et 2326 2305 rue de l’Université,
    Register

    CanPKU vous invite tous à vous joindre à eux pour leur événement régional en la ville de Québec 

    CanPKU welcomes all to join us at our Regional Event in Quebec City 

    Veuillez vous inscrire sur cette page d'événement si vous prévoyez y assister EN PERSONNE. 

    Please register at this event page if you plan on ATTENDING IN PERSON. 

    •  Les activités comprendront des séances d'information, des groupes de discussion et plus encore.
    • Les repas sont fournis en gardant à l'esprit les régimes pauvres en protéines. Veuillez nous indiquer sur le formulaire d'inscription si des besoins alimentaires supplémentaires doivent être satisfaits. Nous ferons de notre mieux pour vous accommoder.
    • Un service de garde sera assuré pour les moins de 12 ans. 
    • Activities will include information sessions, break out groups and more.
    • Meals are provided keeping low protein diets in mind. Please let us know on the registration form if any additional dietary needs are required to be met. We will do our best to accommodate.
    • Child care will be provided for those under 12 years old

    Ne laissez pas les finances vous empêcher de participer. Des bourses sont disponibles. 

    Do not let finances get in the way of attending.  Scholarships are available.  


Past events

2022-10-01 Parents Cafe - Support Group
2022-10-01 Teen and Adult Cafe - Support Group
2022-09-24 Adult Cafe - Support Group
2022-09-10 Parents Cafe - Support Group
2022-09-10 Teen and Adult Cafe - Support Group
2022-09-09 In Person Camp MagniPHEque ~ En personne - Événement régional
2022-08-25 Adult Cafe - Support Group
2022-08-20 Parents Cafe - Support Group
2022-08-20 Teen and Adult Cafe - Support Group
2022-07-28 Teen and Adult Cafe - Support Group
2022-07-23 Parents Cafe - Support Group
2022-07-23 Adult Cafe - Support Group
2022-07-15 Adult Cafe - Focus Group
2022-07-07 NPKUA's Challenge the Summit 2022 Conference
2022-06-30 Adult Cafe (And Support Group)
2022-06-25 Adult Cafe (And Support Group)
2022-05-15 In Person - Prairies Regional Event ~ En personne - Événement régional des Prairies
2022-05-15 Regional Event - Red Deer Alberta
2022-04-28 Adult Cafe (And Support Group)
2022-04-16 Adult Cafe (And Support Group)
2022-04-09 Adult Cafe (And Support Group)
2022-03-24 Adult Cafe (And Support Group)
2022-03-12 Adult Cafe (And Support Group)
2022-02-28 Sip Sip Hooray! A fun PKU and Allied Disorders event for all ages on Rare Disease Day.
2022-02-24 Adult Cafe (And Support Group)
2022-02-12 Adult Cafe (And Support Group)
2022-01-27 Adult Support Cafe
2022-01-22 Adult Support Cafe
2021-09-10 GLOBAL PKU PATIENT CONFERENCE!
2021-05-20 Diet for Life
2021-05-16 Teen Cafe
2021-05-16 La PCU et le crédit d'impôt pour personnes handicapées (CIPH)
2021-05-15 Movie and Discussion. "So What Can You Eat"
2021-05-15 National Strategy for High Cost Drugs for Rare Disease.
2021-05-15 First Year Cafe
2021-05-14 PKU Advocacy in Your Province - Manitoba
2021-05-14 School Aged PKUers
2021-05-14 PKU Advocacy in Your Province - Ontario
2021-05-14 Research Update - PKU and the Brain
2021-05-13 PKU and the Disability Tax Credit (DTC)
2021-05-13 Moving into Adulthood: What advice would you tell your younger self?
2021-05-13 Virtual Grocery Store Tour
2021-05-13 LES AVENTURES DE RUBY PRICKLEBOTTOM: LIVRE 1: RUBY A LA PCU
2021-05-12 An update on Synlogic’s PKU Development Program
2021-05-12 Patient-oriented research for rare diseases.
2021-05-12 Maternal PKU
2021-05-12 Story Telling: The Adventures of Ruby Pricklebottom
2021-05-12 PKU Advocacy in Your Province - Alberta
2021-05-11 How Covid-19 may have introduced new treatment possibilities
2021-05-11 PKU Advocacy in Your Province - British Columbia
2021-05-11 Story Telling: The Adventures of Ruby Pricklebottom
2021-05-11 PKU Advocacy in Your Province - NewBrunswick
2021-05-11 Home Phe Monitor
2021-05-10 La PCU et le crédit d'impôt pour personnes handicapées (CIPH)
2021-05-10 PKU Advocacy in Your Province - Quebec
2021-05-10 Visite virtuelle en épicerie
2021-05-10 PKU and the Disability Tax Credit (DTC)
2021-05-10 Save the date: Staying Together Webinar Week

POSTPONED EVENTS

Regional Events -

Thanks to a little virus called Covid 19 our regional events have been postponed for 2021-2022.

Education. Networking. Samples. These are a few good reasons to attend a PKU event. We promise you, it is worth the time and travel costs required. CanPKU hosts events all across Canada each year as part of our annual Event Series, and we are also happy to share information about events hosted by others (please scroll to the bottom of this page). Why?  Because Knowledge Leads to Better Health. 

2021 © Copyright CanPKU.ORG

CONTACT US

260 Adelaide Street East, #180
Toronto, ON, M5A 1N1, Canada
Toll Free: 1-877-226-7581
Email: info@canpku.org


Powered by Wild Apricot Membership Software