Legislative Advocacy Meeting

Legislative Advocacy Working Group

The Turner Syndrome Foundation’s Legislative Advocacy Working Group (LAWG) is a dedicated team of volunteers committed to advancing public policies that improve the lives of individuals affected by Turner syndrome. Through grassroots advocacy, education, and community engagement, members help ensure that the voices of patients, families, caregivers, and healthcare professionals are heard by local, state, and federal policymakers.

What Does the Legislative Advocacy Working Group Do?
The Working Group monitors legislation and public policy issues that impact healthcare access, rare disease awareness, research funding, education, and patient support services. Members work together to:

• Educate elected officials about Turner syndrome and its lifelong health implications.
• Advocate for policies that improve access to healthcare, diagnosis, treatment, and support services.
• Participate in letter-writing campaigns, phone calls, and meetings with legislators and their staff.
• Raise awareness of issues affecting the Turner syndrome community at the local, state, and national levels.
• Collaborate with other rare disease and patient advocacy organizations on shared policy priorities.
• Share updates on legislative developments and opportunities for community action.

How Can I Join?
Anyone passionate about making a difference for the Turner syndrome community is welcome to participate. No prior advocacy experience is required.
To get started:

• Complete the Turner Syndrome Foundation Volunteer Application.
• Select Legislative Advocacy when asked, “In which areas would you like to volunteer?”
• Complete the online volunteer orientation.
• Attend our monthly virtual working group meetings and participate in advocacy activities at a level that fits your schedule.

Whether you can make a phone call, write a letter, meet with a legislator, or help organize advocacy efforts in your state, your participation can help create meaningful change for individuals and families affected by Turner syndrome.

To learn more and get started:

Together, we can amplify the voices of individuals and families affected by Turner syndrome and create lasting change.