Toolkits and Checklist

We'd like to thank our Patient-Parent Advisory Committee for their contributions to our toolkits and checklist. 

The Classical Homocystinuria is designed to give you an over view of what homocystinuria is, how it's treated and how to better manage the diet and disorder.


The information in this toolkit is not meant to replace the guidance of your physician and other healthcare professionals.

Upon diagnosis many people have questions about what to expect from their clinic visits. Usually our first visit to a whirlwind of people elicits emotions and you might not remember who you met, or the role they play. In addition to that, you might be unsure of what you should bring, or you may be nervous  what will be done during your visit. We’ve tried to create a simple infographic that spells out who you may meet, what to bring, what things may be done. On the back is a frequently asked questions.


When you have HCU or any other special dietary needs, being ready to handle difficult situations requires special planning, in addition to the typical things everyone needs to consider in the event of an emergency or natural disaster. Here are some key things to think about and discuss with your family today.


Prepare yourself in advance!