Tuesday, January 31, 2017

XLH Information for Rare Disease Day

The theme for this year's worldwide Rare Disease Day is "Research Brings Hope to People Living with a Rare Disease." With significant research being conducted in relation to our own raredisease, we are all living examples of what this theme can mean to a patient group. So we are looking for our members to help us spread the word about XLH and associated phosphate-wasting disorders for Rare Disease Day 2017.

There are a few ways you can help!

•        We have prepared a press release and a cover letter that can be downloaded here (along with instructions for use) and sent to your local newspapers now (don't wait for February 28th). You simply need to personalize the cover letter so that local journalists can contact you if they have questions.

•        Even better, you could use our template and add a brief section about your own experiences with XLH and your hopes for what research can do for you, your family, and the XLH community. Local papers are much more likely to pick up the story when they realize that it is relevant to one of their constituents and can put a face to the name!

•        As Rare Disease Day approaches, use your social media outlets! Consider making a sign that includes this year’s Rare Disease Day theme and mentions that you have XLH, take a selfie with the sign, and put your picture out there for friends and family to see. Be sure to include The XLH Network's website, XLHNetwork.org, and our Twitter handle @XLH_Network, on your sign for anyone who wants to learn more. We have some premade ones you can download here.

The XLH community is living proof that research IS bringing hope to those living with rare diseases. We hope you will help us let others know!

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