Patient and Caregiver Registry in English & Spanish
Patients and caregivers of young children are urged to become part of the solution to improved quality of care outcomes for all girls and women with Turner Syndrome.
Animamos a los médicos a informar a los pacientes sobre el Registro de Pacientes con Síndrome de Turner.
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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.
Turner Syndrome Foundation