What Now?

Receiving a new MASNS diagnosis can feel overwhelming and uncertain, but please know that you are not alone. The MASNS Foundation is here to offer support, guidance, and understanding every step of the way. Below, we have outlined a few key resources that will help you to learn more about your diagnosis and get connected with our community.

Step 1 – Get Connected:

• Join our MASNS/PRKAR1B Facebook group
• Sign up for our MASNS newsletter:

*Note that our Facebook group and foundation website are both managed by the MASNS Foundation team. Feel free to reach out to us through either route to get connected.

Step 2 – Join the MASNS Patient Registry:

• Email Dr. Christian Schaaf (christian.schaaf@med.uni-heidelberg.de) or reach out to the foundation (contact@masnsfoundation.org) and we can help connect you with Dr. Schaaf’s team.
• Keep your genetic testing results handy – these results include important information about your diagnosis, including your specific PRKAR1B gene variant (e.g., R335W, V302M, etc.).

Step 3 – Learn More about MASNS:

• Check out our About MASNS page
• Read more about MASNS from the National Organization for Rare Disorders (NORD)
• Reach out to us at contact@masnsfoundation.org with any additional questions/concerns