Professional Initiatives | Turner Syndrome Foundation

Professional Initiatives

Be a partner in care. Medical professionals provide hope for the future of individuals, families and communities affected by Turner Syndrome. Join the Professional Registry to belong to a prestigious community of care and support.

Professional Leaders

TSF encourages professionals to champion the cause in their respective field, professional community, and regionally where they live and practice.

Knowledgeable and caring providers stand at the first line of defense in identifying and managing care of Turner Syndrome. There are many ways to improve care outcomes.

  • Diagnosing girls as early in life as possible
  • Following the recommendations of the Clinical Care Guidelines
  • Staying current on new findings in clinical research
  • Improving clinical standards and access to care

Professionals of varied expertise and interest are sought to enliven their life’s work and to broaden knowledge, resources, and information about Turner Syndrome.

Realize your impact!  

Select from the following list of possible activities or recommend an initiative based on your interest and availability. 

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.

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:

  • To promote the importance of early diagnosis and best possible care of congenital and acquired cardiovascular disease in patients with Turner Syndrome
  • To raise clinical awareness of cardiac care guidelines for Turner Syndrome patients throughout life
  • To emphasize preventive cardiac care in an at risk population
  • To develop a crisis plan to recognize, diagnose and treat an emergent cardiac event in patient with Turner Syndrome 

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.

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.

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.

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.

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.

Thank you for exploring ways to go above and beyond to support this mission and those affected by Turner Syndrome.

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