Rare Disease Day 2019

Rare Disease Day 2019

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day events are down to...
THE HIGHLIGHT OF OUR YEAR

THE HIGHLIGHT OF OUR YEAR

 It is with great excitement that the Board get together every year to plan our annual Family Gathering. We really try to spoil our families as they make a lot of effort to attend. We had  12  families attend out of 18 families that we have. We welcomed them with eats...