Many of the STAR children with their family standing in a garden.

Supporting families affected by Salla disease

STAR child Leni surrounded by soap bubbles and wearing a big smile of her face.
The Families


Celebrating the incredible Salla kids and their families. These children, with their families by their side, embody courage in the face of this devastating neurodegenerative disease.

Read more about their personal journeys and how they find hope and joy every day.

help accelerate research

Join the RARE-X program

STAR is partnering with RARE-X to build a data collection program for Salla families. When you participate in the Salla data collection program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.

STAR child Sami sitting in a wheelchair smiling and waving.
become part of the community

Join the STAR family contact database

STAR has established a central resource of family and caregiver contact information to provide families with targeted information regarding FSASD patient community support, emerging research efforts, the proposed patients registry and treatment information.

Research consortium member Bruno Gasnier hugging STAR child Sami.
STAR child Anea wearing a life jacket sitting in a paddle boat with some of her family members.
The family of STAR child Leni standing in a field of sunflowers.