Saturday is International XLH Awareness Day, and the community needs you to do your part in letting the public know what it’s really like to live with XLH.
The XLH Alliance has done the hard work, putting together informative graphics about the “best care” for XLH, taken from both medical literature and a survey of patients, and then following up with more patient commentary about the benefits of getting the best possible care. You can find those graphics on social media, shared by the Alliance and its members from a variety of countries around the world.
So what can you do? Put the “social” into social media. Go find the XLH Alliance on any social media platform you use regularly, and follow them there. Facebook: https://www.facebook.com/xlhalliance Twitter: https://twitter.com/AllianceXlh Instagram: https://www.instagram.com/xlhalliance/ LinkedIn: https://www.linkedin.com/company/xlh-alliance/ I’m sure there are others, but those are the platforms I use regularly.
Then, when you see their posts, don’t just nod in agreemant and scroll past! Like them, share them and comment on them! Thanks to algorithms, if you don’t engage in some way, the platforms will stop showing you the posts. Sharing is particularly good, both to show the platform you really do want to see the posts, and also because you never know who might see the post you share and find it useful.
If you live in one of the countries that are members of the Alliance (Netherlands, India, Chile, Argentina, Canada, Russia, Australia, UK, US, Morocco, Brazil, Bulgaria, Romania, Israel, Sweden, Italy, Portugal, Austria, Finland, Denmark, France, Germany, Spain), join your country’s group! (You can find a clickable list by scrolling down to the bottom of the Alliance’s website: https://xlhalliance.org/).) Not only will you help the local organization better represent you, but connecting with local patient advocates is the very best way to find out about the “best care” available to you, since, unfortunately, access to care varies greatly from country to country. And if you’re in a country that’s NOT part of the Alliance, consider stepping up to organize your own group and reaching out to the Alliance for advice on how to do it!
If you’re not ready to go public with your diagnosis or even to engage durectkt with a patient group, how about raising your own awareness, or that of your immediate friends and family who already know about your diagnosis? XLH Australia is hosting a free, virtual, educational event, which you can join by signng up here: https://www.facebook.com/events/825208278148063?ref=newsfeed You can also find educational videos to watch yourself or with family/friends on Saturday (or any day) at The XLH network’s youtube channel: https://www.youtube.com/c/XLHNetworkIncVideo/videos
There’s lots more you can do to raise awareness this week and every week. I do a good bit of patient advocacy throughout the year, usually one-on-one with clinicians, researchers, and pharma, both on social media and behind the scenes, as well as writing this blog. I’d be happy to share my methods with anyone who’s interested in doing that sort of work, but I know it’s not right for everyone. The Alliance or your local patient group can give you more ideas for how you can raise awareness if you ask them. But starting by engaging with the XLH Alliance’s awareness campaign this week is a simple and effective first step.
So, what are you going to do on October 23rd for International XLH Awareness Day? Plan now and mark your calendar so you don’t forget!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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