Petition for Awareness

TS Care Petition

Tell Congress: Recognize Turner Syndrome and Improve Lifelong Care

We call on the United States House of Representatives and Senate to formally recognize Turner Syndrome Awareness and advance policies that improve access to appropriate health care, accommodations, education, resources, and insurance coverage for girls and women living with Turner syndrome.

Turner syndrome (TS) is a chromosomal condition affecting approximately 1 in every 2,000 live female births. It occurs across racial, ethnic, geographic, and socioeconomic populations. Turner syndrome is typically not inherited and results when all or part of one X chromosome is missing or altered.

The impact begins before birth. Most pregnancies affected by Turner syndrome do not survive to term. Those who survive can experience significant health, developmental, educational, and psychosocial challenges throughout their lives.

There is no cure for Turner syndrome, but early diagnosis, appropriate treatment, preventive monitoring, and coordinated lifelong medical care can improve health and quality of life.

Yet too many individuals and families struggle to find knowledgeable providers, specialized care, appropriate accommodations, reliable information, and adequate insurance coverage. Limited public and professional awareness can contribute to delayed diagnoses, gaps in care, and unmet needs.

Why Congressional Action Matters

Turner syndrome deserves greater national recognition as an important women’s and girls’ health issue. Increased awareness can strengthen early identification, improve access to appropriate medical care, encourage professional education and research, and help families obtain the services and accommodations they need.

Federal recognition can also help bring Turner syndrome into broader conversations about women’s health, rare and genetic conditions, health equity, education, research, and access to care.

We Call on Congress to Act

By signing this petition, I urge members of the U.S. House of Representatives and U.S. Senate to:

  • Proclaim and support Turner Syndrome Awareness at the national level.
  • Promote access to coordinated, evidence-informed lifelong health care for individuals with Turner syndrome.
  • Support appropriate educational and workplace accommodations for those affected by Turner syndrome.
  • Improve access to medically necessary treatments, preventive care, specialists, and adequate insurance coverage.
  • Encourage education and awareness among health care professionals, educators, policymakers, families, and the public.
  • Advance research and policies that address the unmet needs of the Turner syndrome community.

I Stand With the Turner Syndrome Community

I believe every girl and woman with Turner syndrome deserves the opportunity to receive appropriate care, support, accommodations, and resources throughout her lifetime.

I stand for access to knowledgeable health care providers, medically necessary treatments, educational resources, accommodations, support services, and adequate insurance coverage.

I support policies that address the unmet needs of girls and women living with Turner syndrome.

I call on legislators to recognize Turner Syndrome Awareness and take meaningful action to improve patient care.

I stand with the Turner syndrome community—and I ask Congress to stand with us.

Please sign this petition and help make Turner syndrome visible, understood, and supported