Newly Diagnosed?
Welcome to the Community!
You are not alone
We are a global community of patients, families, physicians, and researchers, working together to give all SDS patients more birthdays to celebrate.
Action cures fear
An SDS diagnosis brings with it lots of emotions and uncertainty. There is no targeted therapy for SDS, yet. We are working tirelessly to change that. It takes a village and you can make a difference.
Now what?
There are so many opportunities for you to make a difference for your loved-one with SDS and for the community. Check out these important steps to get started.
Share your experience to drive research
The SDS-GPS program is the only global patient registry that collects and structures data directly from those living with SDS (and related disorders) in order to accelerate research and therapy development and connect patients with research opportunities most relevant to them. Join today.
Connect with community
Connect with SDS patients and families who "get it" and have your back. Check out various connection opportunities, here.
Join our mailing list and follow us on social
Learn about SDS
Knowledge is power. Access all relevant information right here on our website. Being informed will help you be an effective partner with your healthcare team and be able to make informed decisions regarding care for yourself or your loved-one with SDS.
The science behind SDS and the latest research advances
Resources for children
We developed age-appropriate educational materials for kids to learn about SDS, science, and coping skills.
Get your community involved in fundraising
One of the most impactful ways to raise awareness and advance research is to fundraise. Check out our resources here. Or, consider a one-time or monthly donation to keep our programs going and enable us to continue making an impact and get closer to therapies and cures.