Community gatherings allow for both casual and structured sharing time. Annual picnics have been
providing opportunities for sharing and fun since 2009.
Sibling Appreciation Day
Our first Sibling Appreciation day focused on providing parents and siblings with a comfortable,
fun environment where they could share their emotions. Counselor led workshops promoted the
effective expression of feelings, taught coping mechanisms and worked to enhance self-esteem.
International Rare Disease Day
Each year on Rare Disease Day (Feb 28 or 29th in the case of a leap year – a rare year!) the foundation hosts presentations by Microgrant recipients designed to bring together stakeholders to share in the successes of research studies from the past year. It is an uplifting evening where everyone can share in the vision of transforming the world of rare disease care – one Microgrant at a time!