Celebrating Rare Disease Day

Celebrating Rare Disease Day 2021! 
On February 25th, Washington State University (WSU) took the time to recognize Rare Disease Day.  The McConnell family put together a video sharing some insight as to how a rare disease impacts a family.

We are grateful to the team at WSU for their continued support of SSADH research and are proud to team up with them by celebrating Rare Disease Day.

The agenda included research updates, what life looks like living with a rare disease and one young man’s goals to overcome SLOS.

This is a link to the interview with Alice, Evie and Jack McConnell.

Thank you to Alice, Evie and Jack for taking the time to make this amazing video!