Commitment

C22C Commitment

As parents supporting other parents and people affected by chromosome 22 disorders, our commitment is to try to ensure people feel connected, have the information they need, and offer them a place to feel a sense of community. 

Our mission is to spread awareness and offer support and information on all chromosome disorders.

We do this by participating in various awareness days and by posting on social media, providing an informative and helpful website, including links to other resources, and providing ways for families to learn and connect through multiple social media outlets.

In 2021, we were fortunate enough to host an intern with the Masters of Public Health program through the University of Waterloo. Dr. Amira Khan helped us engage members in a survey to see what more we could do to meet member’s needs. We have already made many changes to reflect what members have highlighted were important to them. You can read a copy of the report here.

Dr. Khan also wrote a comprehensive article on family advocacy groups, which highlights the work C22C has done over the years and how beneficial family groups are in supporting rare disorders.

We always want to hear feedback about gaps in support and even sometimes what we get right (or not!). What would you like to see as part of our online presence? We grow as needed. Please let us know what you need! Email c22central@gmail.com.