An Apert syndrome diagnosis presents a variety of challenges and complexities for families navigating systems of care for the rare condition. This chapter will discuss the unique roles of family members as both caregivers and advocates. Using direct quotations from video-call interviews with eight parents, including three with Apert syndrome themselves, the authors illustrate how diagnosis, treatment, and societal reactions can affect familial relationships. Key similarities among the narratives include the development of grassroots communities, the impact of advocacy in reducing stigma, and the importance of empathy in medical and social interactions. The authors also highlight the joy and resilience of these families through an exploration of their strong bonds and positive adaptations. Additionally, this chapter provides links to resources and support networks created by and for families and caregivers.