Patient Advocacy

Join us to be part of the solution 

Nobody knows SDS as intimately as SDS patients and their direct caregivers such as their parents. And everyone has something valuable to bring to the table. 

We want to give all patients and their families a voice and an opportunity for action. Beyond joining the registry to share your data - the most critical component in enabling research -  you can get involved in a variety of ways.

  • Contribute your passion and skills to our efforts or your local SDS support organization.

  • Raise awareness about SDS in the medical community and your own network. We provide a wide range of support materials.

  • Provide peer to peer support by reaching out to fellow SDS families. You can reach them through Facebook, local events, and through your local SDS support group.

  • Raise funds. Our programs depend critically on your support.

  • Become an advocate and ambassador. We can help you document and share your story widely, in a way that will make you proud and feel empowered. Check out our awareness resources and reach out to us today.