Stowarzyszenie Zespołu Williamsa w Polsce was founded in 2007. Our Williams Family consists of over 170 people with Williams Syndrome, their parents and siblings. We also have specialists in medicine, law and therapy, as well as volunteers.
The association aims to support patients and their families, as well as caregivers, educators and therapists. We cooperate with medical and genetic centers, universities and other organizations for patients with rare diseases in Poland.
We organize scientific and educational conferences and regional family meetings. We have published the book “Elf Medicine”, which is a source of medical knowledge and a collection of parents’ experiences and life stories of children and adults with Williams Syndrome.
Aleksandra Sobieska-Listewnik – represents Poland in FEWS, mother of 11-year-old Elf. She actively works for people with Williams Syndrome on the management board of the Association and supports the social movement for rare diseases in Poland. Enthusiast of tourism and learning about the cultures and cuisines of other countries.