Our Family and Rare Disease Day 2019

Our Family and Rare Disease Day 2019

Rare Disease Day 2019 - Today is International Rare Disease Day and what I want to share with you is what having a rare disease means to our family, and how it has impacted our lives.  And while there’s lots I can talk about when it comes to how it affects Monty directly, I want to share with you some of the less obvious challenges we’ve had to face as a family in living with and managing a rare disease.