February 28, 2021 is Rare Disease Day.
My son, Archie, was diagnosed at birth via the newborn screening test with a rare genetic metabolic disorder called Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCADD).
Let's come together (virtually) and walk around Parrsboro (if you are not in Parrsboro, walk in your local community). You can walk at any time during the day, for as long as you’d like. Please send me pictures or videos of how you are raising awareness for MCADD and other Rare Diseases!
My hope is that after COVID-19 we can arrange a proper event and bring together Rare Disease families all over Nova Scotia.
The Canadian Organization for Rare Disorders (CORD) has agreed to partner and any funds raised will go directly to them.