hank you for visiting the Costello Syndrome Patient Insight Network! This network was created by the Costello Syndrome Family Network to help people with Costello syndrome and their families. The goals of this network are:
•Collecting and organizing health data about Costello syndrome in a central location.
•Learning what areas of research are most important to families of people with Costello syndrome.
•Accelerating patient-centered research and attracting research partners to address the needs prioritized by the Costello syndrome community.
•Increasing awareness of Costello syndrome and providing easy to understand information about Costello syndrome to those who wish to learn more.
•Improving international access to reliable information about Costello syndrome and promoting research opportunities.
Your participation and willingness to share information will help lead to better understanding, care, surveillance, and treatments for people with Costello syndrome. The information that you provide is de-identified to protect the privacy of patients and families. If you have any questions, concerns, or would like to learn more about Costello syndrome and this Patient Insight Network, please feel free to contact the Costello Syndrome Family Network.
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The Costello Syndrome Family Network (CSFN), founded in 2002, is a family support organization that works to promote early and accurate diagnosis of Costello syndrome, while raising overall awareness of the syndrome, promoting research into the causes, manifestations, and management of the condition. CSFN’s mission is to overcome the challenges of Costello syndrome. CSFN helps assure that those with Costello syndrome and their families have the tools and support needed to live lives that are as full and as healthy as possible in order to reach their maximum potential. |
Partner organizations
hank you for visiting the Costello Syndrome Patient Insight Network! This network was created by the Costello Syndrome Family Network to help people with Costello syndrome and their families. The goals of this network are:
•Collecting and organizing health data about Costello syndrome in a central location.
•Learning what areas of research are most important to families of people with Costello syndrome.
•Accelerating patient-centered research and attracting research partners to address the needs prioritized by the Costello syndrome community.
•Increasing awareness of Costello syndrome and providing easy to understand information about Costello syndrome to those who wish to learn more.
•Improving international access to reliable information about Costello syndrome and promoting research opportunities.
Your participation and willingness to share information will help lead to better understanding, care, surveillance, and treatments for people with Costello syndrome. The information that you provide is de-identified to protect the privacy of patients and families. If you have any questions, concerns, or would like to learn more about Costello syndrome and this Patient Insight Network, please feel free to contact the Costello Syndrome Family Network.
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