Strategic Plan for Science


To support the development of effective therapeutic treatments through scientific research, improve the quality of clinical research and care available to families, and improve communications and collaborations in PMS research.


  • To enhance financial resources for PMS research through a coordinated funding strategy
  • To fund one or more grants that increase replication and validation of model system findings
  • To announce one or more funding opportunities per year that build the field of research
  • To fund one or more seed grants per year that facilitate novel directions in PMS research
  • To make patient-contributed data available to explore natural history and enroll patients into clinical research studies & trials.
  • To provide grants that improve clinical trials readiness.
  • To fund one or more seed grants that address a high priority quality of life(QOL) issue in PMS
  • To improve clinical care recommendations through the sponsorship of a consensus meeting.
  • To increase the uptake of clinical care guidelines through the development of content.
  • To improve patients’ access to care through the establishment of PMS Centers of Excellence.
  • To fund at least one grant to understand what factors underlie the variability in PMS.
  • To enable sharing of unpublished data and opportunities for collaboration by holding at least one PMSF-sponsored research meeting per year.
  • To influence PMS research and stimulate new ideas and projects through ongoing communication with scientific stakeholders.
PMSF | Phelan-McDermid Syndrome Foundation