Kohen: The Start of a Rare Journey

Kohen: The Start of a Rare Journey

In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Jaimie-Lee Cripps in Australia as she reflects on her son’s beginnings in his rare...
Trevor is Rare – Many, Strong, Proud

Trevor is Rare – Many, Strong, Proud

In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Brandy Smallwood in USA as she shares the qualities of her son in defining what it means...
Our Rare Journey: Lilly’s Story

Our Rare Journey: Lilly’s Story

In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Nicole Reeves in USA as she reflects on her daughter’s strength and love for others...
Rare est Alya, elle est ma perle rare

Rare est Alya, elle est ma perle rare

In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Audray Bisbrouck in France as she describes her daughter’s journey with a rare...