Parental Insights into Adsl deficiency

Parental insights into AdsL deficiency.

In 2015, I created a parent survey for our families to begin creating a natural history of the disease to assist our scientific research findings.

Complete the ‘AdsL Parent Survey’ here

The survey is appropriately named ‘An insight into AdsL deficiency’ and will take approximately 15 minutes to complete.

It’s a detailed parent survey as it aims at providing parents and paediatric specialist care teams clear insights into the consistent patterns within our children be it from developmental observations to dietary reactions. I hope that one day this data is used as a resource for families to provide optimal health pathways in caring for their children with AdsL deficiency.

Feel free to contact me personally should you require more information in relation to this parent survey or if have other information or medical journals of note to add to this post or if you’d like to help by getting involved in this legacy project and continue to support our research and fundraising teams into the future.