Welcome to our Newly Diagnosed Families

A warm WELCOME to the families and care providers of newly diagnosed patients with an STXBP1-related disorders. Know that you are not alone.

It’s so easy to learn more, join in, and make a difference … right away.

Here are the fastest ways to get started

1.

Visit and bookmark our website: stxbp1disorders.org
Make this site your first stop and main destination to learn more about all things related to STXBP1. Be sure to use our glossary for help understanding new medical terms.

2.

Follow us on social media especially our STXBP1 Disorders Facebook page which is the most active and join any of these other online communities. You can use Facebook as another great source to stay current with updates and the Facebook groups as a safe place to connect with other parents and care providers

3.

Register in our Contact List. This is the best way to stay current with all news from the Foundation including current research and clinical trial opportunities. Plus, we have an alternative sign-up for other community members and caregivers to get our newsletters and announcements as well. Anyone can subscribe to our mailing list with their name and email only here.

4.

Join our STARR Natural History Study in the US. This program is currently active and was developed to help researchers better understand how the disorder affects someone over time. Read what’s involved here.

5.

Advise your doctor and all your other healthcare providers to assure they have the STXBP1-related disorders ICD code QA0.0141 entered in your STXer’s medical records. See why this is important in this news item.

6.

Share your experiences by completing a survey or participating in a clinical trial. The questions answered today could lead to the discoveries of tomorrow. Go to: https://www.stxbp1disorders.org/clinicaltrialsandresearch for an overview. And see how you can help the STXBP1 community get ready for clinical trials by going here.

7.

Participate as a Volunteer, Fundraiser, an Advocate, and more … There are so many ways to help out. Whether it’s joining a Regional Group, assisting with our programs, donating, fundraising, writing a blog post, or amplifying our messages on social media. It’s all important. It’s rewarding. It’s appreciated. And, it all makes a BIG difference in helping to find a cure. See just some of our ideas under the Get Involved link in the header above.