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ISOVALERIC ACIDEMIA (IVA)

Although we wish we had the resources to help everyone, we are limited. We include any disorder that includes a low protein diet under our umbrella to ensure everyone has access to a patient support group. There is a Canadian Group for Organic Acidemia. We encourage you to check out https://oaanews.org/ for more assistance.


Awareness

CanPKU+ believes that creating awareness around Isovaleric Acidemia (IVA) 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 a baby being born with IVA is 1 in 100,000 to 200,000. For more information see here

Downloadable Resources for Individuals with IVA

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 and Links

2022 - Cambrooke has created a Wellness Journal for those with IVA . 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



NORD - Rare Disease overview of Isovaleric Acidemia

2020 - Abbott - Family Guide for those with IVA

2021 - Nutricia - Fact Sheet IVA



Infancy

Eating Well

Region or Province Based

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Toronto, ON, M5A 1N1, Canada
Toll Free: 1-877-226-7581 (1-877-CANPKU1)
Email: info@canpku.org


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