Turner Syndrome Foundation's Initiatives

Turner Syndrome Foundation’s initiatives has four main program focus areas: awarenessadvocacy, research, and education. Through the invaluable support of experts and generous donors, we have been able to accomplish the following initiatives.

The Research Committee meets monthly to review, plan and forge new research initiatives and collaborations with universities and scholars to yield new information pertaining to all aspects of Turner Syndrome.

Philanthropists, fundraising professionals, writers, investors, and development officers are sought to join the Development Committee of the Turner Syndrome Foundation. Statistically, there are limited allocated funds directed to women’s health. TSF is assembling a group of socially conscientious individuals with philanthropic interest to contribute to support women’s health to join the Development Committee.

The Education Committee is comprised of collegiate, high school, and elementary teachers of education to discuss educational concerns and criteria for special needs and gifted students. The committee meets semi-annually to review and update literature. In 2010, TSF in collaboration with Kean University College of Education, held the first ever conference for educators and again in 2017.

The Insurance Committee meets bi-monthly to address insurance issues patients cope with in appealing for diagnostic testing, medication, and therapies. Legal and insurance specialists convene to identify gaps in coverage, discover barriers to care, and plan advocacy programs to improve access to specialized care for all.

The Turner Syndrome Council on Cardiology (COC) is an initiative of the Turner Syndrome Foundation dedicated to improving cardiac care outcomes that can save lives. A multi-disciplinary faculty of experts join to address complex issues and core objectives through an online activity for all medical professionals. Meet the Council on Cardiology Members.  Take a look at the Strategies for Improving the Management of Cardiovascular Issues Seen with Turner Syndrome Clinical Activity

Designed to approach a sensitive subject affecting the lives of women with Turner Syndrome. We identified that as women grow into adulthood, the issue of family planning and infertility needs considerable attention to adequately address these concerns. In 2016, the work of the COI culminated in published guidelines and recommendations on infertility and family planning for healthcare providers. Read Fertility Preservation in Women with Turner Syndrome: A Comprehensive Review and Practical Guidelines.

Learn more about the group and join here:

TSF in collaboration with Scherer Clinical Communications and AACME educated more than 27,000 physicians through its online CME entitled, “Identifying and Managing Care of Girls with Turner Syndrome”. This activity was fully funded by a grant from Novo Nordisk. View more information for physicians.

In a monthly webinar program, professionals give presentations about the topics most relevant to Turner Syndrome patients and caregivers. Webinar Presenter Proposal

Educating patients and caregivers ensures best longterm outcomes. The Patient Education Workshops are organized by Turner Syndrome Foundation and university medical centers to grow outreach where it belongs, in the community, and often result in the formation of a center of specialized care for Turner Syndrome.  Plan a Workshop

The Turner Syndrome Foundation, in collaboration with the Endocrine Society’s Hormone Health Network, has contributed in collaboration with an esteemed faculty of medical care providers to develop helpful resources for pediatric providers and patients. The goal of the task force is to provide resources that promote a smooth transition from pediatric to adult care management.

By engaging health care providers in advocacy for patient care, TSF aims to increase supports and resources available to individuals who have TS.

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