Why Rare Disease Day is so important to me!

On the last day of February each year, it is Rare Disease Day.  I never knew of this day before 2011.  I stumbled upon it, when our family dynamic changed, and our son was diagnosed with a rare disease - an intractable form of epilepsy - HHE Syndrome. Over the past 3 years or so, we… Continue reading Why Rare Disease Day is so important to me!