This survey is intended to gather information about the healthcare team that treats or supports your loved one who lives with Phelan-McDermid syndrome.
The goals of this US-based survey are to better understand:
- The types of US medical professionals and specialists involved in caring for individuals with Phelan-McDermid syndrome,
- Where families typically receive care in the US, and
- How different providers coordinate treatment and support.
Your participation in this survey is voluntary. Insights collected from this survey may be used to expand educational outreach to healthcare providers involved in caring for individuals with Phelan-McDermid syndrome. Survey results may be shared on the Phelan-McDermid Syndrome Foundation (PMSF) website and with industry and patient advocacy partners. Information shared or published through this survey will be anonymous. Participants may chooses to provide their name and contact information at the end of the survey, which may be used solely by PMSF to contact the participant.
If you have any questions or would like more information, please reach out to info@pmsf.org.
