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JUNE IS XLH AWARENESS MONTH
June is XLH Awareness Month and June 23rd is XLH Awareness Day in the United States, Canada and Latin America. There are many ways to participate to help us raise awareness of XLH across the globe.
Media Campaign:
This year, we are creating a media campaign featuring YOU, our members. The campaign will be on our social media channels and the theme this year is "We See You". We chose this because we hear often that many XLHers feel unseen at times. This is your opportunity to help us raise awareness by volunteering to be seen!
To participate, please submit a photo of yourself facing sideways, looking forward as if you are looking in a mirror. Include with your photo a few sentences about who you are. Example: "My name is Susan, I am 64 years old, and I live with XLH". Photos can be sent to executivedirector@xlhnetwork.org. Please reach out if you have any questions.
Become an Awareness Day Ambassador:
Each year the XLH Network ask for volunteers to become an XLH
Awareness Ambassador. As an ambassador you will represent the XLH community in your home state by requesting a proclamation from the Governor declaring June XLH Awareness Month and June 23rd XLH
Awareness Day.
This year we will be providing a toolkit with sample letters to news outlets, sample social media post, and other ways to raise your voice. We need one ambassador in each state and all the US territories. For more information or questions please email shannon.sharp@xlhnetwork.org
Advocate on Capitol Hill:
Please join us as we advocate for XLH on Capitol Hill virtually June 6, 2024. As a XLH Champion you will share your XLH story with members of Congress and share the struggles of living with a rare disease. Don’t worry if you do not have experience advocating. We will be holding a training session the week before and one on one training is available. For more information or questions please email shannon.sharp@xlhnetwork.org
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