Maple Syrup Urine Disease

Awareness

CanPKU+ believes that creating awareness around Maple Syrup Urinary Disease (MSUD) 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.

According to Newborn Screening Ontario the instance of babies born with MSUD is 1 in 200,000 Find out more here

Introducing our MSUD Chair Person - Susan

Downloadable Resources for Individuals with MSUD

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.

General Information

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 journal keeping can be found here.

USA - MSUD Family Support Group - Website https://msud-support.org/

Nutricia - MSUD patient can find resources on their YouTube channel: Nutricia Metabolics Canada - YouTube

NORD - https://rarediseases.org/ - Information on MSUD

2020 - A family guide for those with MSUD (Abbott)

(Video) Maple Syrup Urine Disease | Pathogenesis, Signs & Symptoms, Subtypes, Diagnosis and Treatment

Formula Based Information

RxModality has solutions for MSUD. Unfortunately, at this time, none of these products have coverage at the moment in Canada. Should you have any questions on these products email Petr Formanek or want to help us advocate for their coverage please contact us at info@canpku.org MetaXJump10 ZeroVilMinis ZeroVil KJA ZeroSystems

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

Infancy

2021 Nutricia - Temple to MSUD ENGLISH Video livret temple - FRANCAIS vidéo