I’m trying to be mindful that not everyone with XLH lives in the U.S., and we’re stronger together, so I’ll be highlighting the best support/advocacy work I see, regardless of where it’s happening.
I’m not currently affiliated with any particular patient group, but I’m a big fan of the Canadian XLH Network. They’ve only been active for a short time, but they’re doing some great work for patients everywhere, while understandably focusing primarily on Canadian residents.
Their website is here: https://canadianxlhnetwork.org/home/
I’m particularly impressed with the work they’re doing on Instagram with their videos, and the patient stories that are both frustrating (we’ve all had similar, difficult experiences) and inspiring, spreading awareness of the full range of symptoms and challenges and coping tools. You can follow them here: https://www.instagram.com/canadianxlhnetwork/
Most recently they’ve established a Youtube channel, which is a particularly good resource if you’ve missed any of their really excellent videos on other social media platforms.
And they’re collaborating on a webinar about XLH on July 28, 2021, “What Patients and Families Living With XLH Need to Know.” and registration is open now. One of the speakers is Dr. Erik Imel, and I’ve been fortunate enough to hear him speak before, and he is both knowledgeable and entertaining.
If you know of other great advocacy work I might not have heard of, please feel to send an email about it to Gin at GinJones.com.
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Please note that the author of this blog is a well-read patient, not a doctor, and is not offering medical or legal advice.
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