Costello Syndrome Family Network C Sfn

MISSION STATEMENT
- To overcome the challenges of Costello Syndrome

WHO WE ARE:
Costello Syndrome is a rare genetic disorder that can affect every system in the body resulting in complex and critical health and developmental needs. The Costello Syndrome Family Network is here to provide support for those affected by CS and their families.

Our vision is that we can connect every family of a child with Costello Syndrome with the information and support needed for their children to lead optimal lives.

Our network is all about connections.
- Families support each other and share their knowledge and experiences
- Researchers and clinicians from all over the world collaborate with our network in order to understand how to treat and ameliorate the manifestations of this syndrome, and identify promising treatments.

WHAT WE DO::
- Work to make sure that children with Costello syndrome are diagnosed early so that their families will know where to get research-based information and support.
- Forge strong connections between families, researchers, clinicians, and related groups.
- Support and advocate for research to discover treatments that will ameliorate the myriad of medical issues faced by children with Costello syndrome.
- Build a body of information that families can use to understand the condition and know where to get help.
- Eliminate financial barriers for any family of a child with Costello syndrome who wants to attend our biennial family forums.

Costello is an extremely rare syndrome. There are only an estimated 500 people with the syndrome in the world so families can feel stressed, isolated, and alone. Every two years CSFN hosts the Costello Syndrome International Family Forum for families to connect with other families, learn about the latest in medical research, and meet with a dedicated group of researchers. They learn about medical treatments that can ease many of the symptoms associated with the syndrome and resources that can help as they shoulder the burdens and worries of caring for their children’s complex needs.