Annalisa Scopinaro is a mother of three, one of whom has Williams Syndrome. Her journey into rare diseases began with her child's diagnosis, leading her to actively engage in volunteer work. In 2016, alongside numerous families, she co-founded the Association of People with Williams Syndrome Italy, immediately launching initiatives nationwide to aid families and individuals affected by the syndrome. In 2009, the joined the board of UNIAMO, ultimately becoming the President in 2019. She is also involved in European and Italian working groups, including those supported by BBMRI and Eurordis, where she has held coordinating roles.