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X-ORIGINAL-URL:https://turnersyndromefoundation.org
X-WR-CALDESC:Events for Turner Syndrome Foundation
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UID:10003104-1786046400-1786050000@turnersyndromefoundation.org
SUMMARY:Legislative Advocacy Meeting
DESCRIPTION:Legislative Advocacy Working Group\nThe 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. \nWhat Does the Legislative Advocacy Working Group Do?\nThe 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: \n\nEducate elected officials about Turner syndrome and its lifelong health implications.\nAdvocate for policies that improve access to healthcare\, diagnosis\, treatment\, and support services.\nParticipate in letter-writing campaigns\, phone calls\, and meetings with legislators and their staff.\nRaise awareness of issues affecting the Turner syndrome community at the local\, state\, and national levels.\nCollaborate with other rare disease and patient advocacy organizations on shared policy priorities.\nShare updates on legislative developments and opportunities for community action.\n\nHow Can I Join?\nAnyone passionate about making a difference for the Turner syndrome community is welcome to participate. No prior advocacy experience is required.\nTo get started: \n\nComplete the Turner Syndrome Foundation Volunteer Application.\nSelect Legislative Advocacy when asked\, “In which areas would you like to volunteer?”\nComplete the online volunteer orientation.\nAttend our monthly virtual working group meetings and participate in advocacy activities at a level that fits your schedule.\n\nWhether 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. \nTo learn more and get started: \n \nTogether\, we can amplify the voices of individuals and families affected by Turner syndrome and create lasting change.
URL:https://turnersyndromefoundation.org/event/legislative-advocacy-meeting/2026-08-06/
LOCATION:Online
CATEGORIES:Awareness,Virtual
ATTACH;FMTTYPE=image/jpeg:https://turnersyndromefoundation.org/wp-content/uploads/2026/06/Legislative-Advocacy-scaled.jpg
ORGANIZER;CN="Turner Syndrome Foundation":MAILTO:info@tsfusa.org
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