Wednesday, May 20, 2015

What YOU can do

The XLH Network is always interested in recruiting volunteers to help us meet our mission. We realize that we talk about our need for volunteers frequently, but at this time of year the nominating committee always considers how to increase involvement in an attempt to ensure that we have our bases covered and that we are continuing to grow and extend the reach of the Network. We want all patients with XLH to have access to early diagnoses and the best treatment possible, and it takes a lot of volunteers working together to try and meet this goal!

As we look toward 2016, the nominating committee is hoping to recruit volunteers in any number of capacities. Do you like to write? We need volunteers who are interested in writing blog posts about their experiences with XLH. Are you interested in moderating conversations on the forum we are developing? We need volunteers who are interested in trying out the new forum and being trained in how to moderate various threads. Also, there's been a lot of discussion lately about future XLH Days in various parts of the world, but to make that happen, we need volunteers to help organize them. There might be opportunities for less formal regional gatherings too, but again we'd need someone local to be part of the project. Are you interested in serving with others as a point of contact for your region? And, finally, we have a number of other initiatives that aren't ready for unveiling, and we could use people with organizing, clerical, photography, tech, graphic design, local fundraising, database design, and public speaking skills to help us meet our goals.

Of course, we would love it if you could commit to lots of hours every month, but we can also use help that just involves one hour per month, or project-based assistance that begins and ends with a specific project.

The Network is growing, and it is exciting! But as we grow, we are going to need more and more help from volunteers to ensure that we are reaching as many families and medical professionals as possible. We hope that 2016 is the year you will volunteer your time. If you are interested in volunteering, post on our Facebook thread or send us a private message. We are looking forward to everything the next calendar year is going to bring!

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