Women and caregivers of children with Turner Syndrome are encouraged to join the Patient and Caregiver Registry.
Did you know that every day two babies survive Turner Syndrome? Nearly 10,000 babies are born in the United States every year, and most significantly, there are more than one hundred thousand or more families affected by the loss of babies who did not survive birth. You may ask, are there unmet needs and challenges? As we have learned, there sure are!
The statistics surrounding this disorder are confounding. They include late diagnosis, health complications, access to care, transition, as well as adult care challenges. Change for positive outcomes can be realized by a greater advocacy and support for scientific advancements. Your participation in the contact registry provides the Foundation with an opportunity to understand personal experiences and concerns. Opening lines of communication can foster a new community of support and develop long standing peer relationships.
Join the TSF Patient and Caregiver Registry to receive many benefits at no cost to you:
Belong to a growing network of support
Become a positive role model and advocate for Turner Syndrome
Contribute to new research initiatives
Gain helpful insights and access to information & resources
Receive the most current information and updates
Participating in patient centered education programs & outreach
Be connected – Peer to peer support
Entering a small bit of information in the contact registry provides the Foundation with data to advocate and effectively develop meaningful programs. You can trust that the information you provide will be safe with us and will be used exclusively for advocacy purposes.
The goal of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome. TSF is a registered 501(c)(3) nonprofit organization.