Log in


Get involved!

We at CanPKU+ encourage all those with HCU to consider lending your time to support research where you can. There are currently a couple of opportunities that we are aware of:

Science 37 - is We're looking for volunteers with homocystinuria (HCU) to participate in a paid, observational research study where no drug is involved. You could shape the future of HCU research – and be compensated for your participation. Linkn to the site:

Rare-X -Homocystinuria patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive Homocystinuria Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries Link to the site:


CanPKU+ believes that creating awareness around Homocystinuria (HCU) and other rare diseases helps patients…Because Knowledge Leads to Better Health.

When people are aware of a condition, they are more likely to be understanding and supportive.  This might be as simple as ensuring that there are appropriate food choices at the next party your child attends, or it might mean that a politician will fight on your behalf for coverage of treatments.

Riding for a Cause - (Clipped from the article) At 3 months old, freshman Carson Hunt was diagnosed with Homocystinuria (HCU) Cobalamin G (CBLG), a rare genetic disorder. This disorder has caused Hunt’s levels of the amino acid homocysteine to increase far beyond a typical amount, which has led to blindness, developmental delays and may pose other potential health issues in his future. In order to help other families dealing with HCU, Dana helped create the HCU Race for Research in 2019 to raise funds for researching the rare conditionThe Race for Research will take place throughout the entire month of September. During this month, Hunt will be riding his bike 100 miles to help raise money to donate.

Introducing our HCU Chair Person - Samantha

For a full story of Samantha's Journey please follow this link

Videos to Watch (Don't forget to Subscribe to our channel for more!)

According to Newborn Screening in Ontario the instance of a baby being born with HCU is 1 in 200,000 to 300,000. Find out more here

Downloadable Resources for Individuals with HCU

Don't forget to link back to GENERAL DOWNLOADS which have over all downloads for you.

You can also check out the resources under the Research and Patient Support Drop down menu.

HCU NBS Guideline Recommendations  2018 SSIEM

HCU Timeline Page 1(jpg) Page 2 (Jpg)- HCU Network America has collected the HCU timeline from 1960-2019  Also available as a powerpoint

*Shared with permission from HCU Americas

General Information and Links

NORD - Rare Disease overview of HCU

2022 - Cambrooke has created a Wellness Journal for those with MSUD. It is USA based information but most of it still applies to Canadians. Download it here. It will provide information as well as ways to track your rare. Refill pages for tracking can be downloaded here

2021 - Nutricia - Fact Sheet

2020 - Abbott - A Family Guide for those with HCU

Formula Based Information

Nutricia has a Maxamum recipe book available in English and French. You can download it right from here.

Maximum Recipe

Nutricia propose un livre de recettes Maxamum disponible en anglais et en français. Vous pouvez le télécharger directement à partir d'ici.

Recettes Maxamum


Eating Well

Other Websites and Resources

2021 © Copyright CanPKU.ORG


260 Adelaide Street East, #180
Toronto, ON, M5A 1N1, Canada
Toll Free: 1-877-226-7581 (1-877-CANPKU1)

Powered by Wild Apricot Membership Software