Genetic Disorders

This week, I learned what Primary Ciliary Dyskinesia was and it broke my heart. One of my facebook friends from undergrad as a little one with PCD. She suggested I look into this website and share it with other families who have children with the same thing.

She also gave me a stated that there is a Facebook group called PCDF Connect that is a great place for parents and adults to connect with this rare genetic disorder.

My hope in posting this is that she finds the adults with this disorder so she can assess the long-term health of her young son.

The link to the website is:
https://pcdfoundation.org/overview/

Here is the link to the facebook group. This group is a year a year old and is close to 800 members which lets you know just how rare this disorder is.

https://www.facebook.com/groups/PCDFconnect/