WHAT IS CARE4ASH1L?
Care4ASH1L is a parent-led support group for families and patient advocates of ASH1L.
WHY DID WE START?
Care4ASH1L was started in 2020 with the hope of bringing ASH1L families together and take initiatives to advance researches on ASH1L disorder.
WHAT DO WE DO?
We approach researchers in the hope that they will expand research on ASH1L disorders and look deeper for associated challenges.
Who we are
We are two moms from different corners of Canada but connected through our ASH1L sons. We virtually met in 2019 and instantly bonded with our unanimous thoughts. We drew inspiration from a CBC podcast and decided to channel a similar platform for many other families and patient advocates of ASH1L.
Our objective is to create a base that is secure enough for families to bond, share experiences and to never feel alone in their challenging journey.
Our motive is to encourage scientists/researchers to prioritize & elaborate research on understanding ASH1L disorders.
Our aim is to familiarize ASH1L patient advocates with ongoing studies, researches and clinical trials related to ASH1L disorders.