As the pre-eminent global organization for families affected by the rare genetic condition Phelan-McDermid syndrome, the Foundation has positioned itself to play a leading role in patient advocacy and family support and driving research breakthroughs. Approved by the Foundation’s board of directors, this new strategic plan enables us to focus the organization’s efforts toward maximizing the impact we can have on this complex syndrome.

The plan was built on a strong belief that a new vision for the Foundation should be co-created. Our families and key stakeholders provided input into a path that addresses the needs and concerns of the different segments that make up the tapestry of the Foundation.