Welcome to our SETBP1 Community!
A warm WELCOME to the families and care providers of newly diagnosed individuals with SETBP1-HD
or a SETBP1-related disorder. It’s easy to join our community and make a difference right away.
HERE ARE THE TOP 5 ACTIONS YOU CAN ADD TO YOUR PERSONAL CHECKLIST TODAY
2.
Follow us on social media especially our SETBP1 Society Facebook page which is the most active. We also have an Instagram page, Twitter account, and LinkedIn account. You can use our private SETBP1 Parent and Caregiver Facebook group 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 SETBP1 Society including current research, studies, and events. Plus, you can select to join our newsletter or add your child to our map within the registration page.
4.
Share your experiences and patient information in our Natural History Studies. We work with 2 industry leading partners to compile the most comprehensive patient information that researchers really need. Just block a little time each day or week to complete each survey and you will really be making a big contribution in our efforts to find a targeted treatment. Learn more about both studies here.
5.
Participate as a Volunteer, Fundraiser, an Advocate, and more … There are many ways to help out. Whether it’s 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.. See just some of our ideas under the Get Involved link in the header above.