you’re not alone. We are here to provide resources and community for you

Receiving this diagnosis can be overwhelming, difficult to understand, and upsetting. Our Foundation exists to provide you with as many resources and information as possible to help you navigate this new reality. Below you will find suggested next steps to get informed and provide yourself & your medical team with the tools & knowledge to best support you & your family.*

  1. Review & share this peer-reviewed Clinical Recommendation document with your medical team.

  2. Review the links & videos below for understanding more about the common symptoms associated with Gould Syndrome

  3. Connect with other Gould Syndrome families for support & community by joining the private Facebook support page here

  4. Watch the NORD (National Organization of Rare Disorders) video for newly diagnosed rare disease patients here

  5. Direct your medical provider & team of specialists to our website - here are resources for them

  6. (West Coast - USA) Referral to Gould Syndrome Center. (East Coast - USA) Referral to Dr. Musolino and Musolino Lab: for assistance with referrals, enroll with the Musolino Lab research, or establish care with Dr. Musolino and other specialists at MGH, please reach out directly at: musolinolab@mgh.harvard.edu.

  7. Ask for support. Majority of the United States have programs that can offer early intervention services, financial assistance, and in-home services for persons with extra needs - often times at little or no extra cost. Your care provider might be able to provide more information, or your state health department.

*These steps are a guide only and do not replace the guidance & care of your medical team.