Wednesday, July 27, 2016

Looking to next year

Even as we're putting the final touches on the program for this year's XLH Day in Houston, Texas, we're already thinking about the next event in 2017.

Picking a location starts by finding a keynote speaker. As we're all aware, there aren't that many experts in XLH, and we don't have the funds to transport speakers to our event, so the choice of sites depends on where potential speakers are.

Beyond that, we also look at factors that will increase attendance. That means we're most likely to choose a major metropolitan area (because the population density means there are more patients living within an easy traveling distance) with a major airport for those who might fly to the event. Another important factor is whether there are XLHers in the area who are willing to serve on the planning committee and help out during the event. A nice plus is if there are educational and cultural offerings nearby, like the popular Children's Museum near our previous event in Indianapolis, that might be of interest to anyone thinking of combining the event with a vacation.

Keeping those factors in mind, where do you think we should hold the next XLH Day?

Wednesday, July 20, 2016

Back to school shopping

It's that time of year -- outfitting the kids for back to school. That used to mean trips to the mall, but these days, a good bit of the shopping is done online through Amazon and other digital retailers.

If that's how you shop, please consider using the Amazon Smile program and naming the XLH Network as the beneficiary. It's easy, it'll make you feel good to know that you're contributing to our important work, and, perhaps best of all -- it doesn't cost you anything.

To shop using Amazon Smile, simply go to On your first visit to the site, you will need to select the XLH Network as the charitable organization of your choice before you begin shopping. The site will remember your choice, and every time you shop with Amazon you will benefit our organization and the work we are doing on behalf of families with XLH. If you are already an Amazon shopper, we hope you will consider selecting the XLH Network as your charity of choice and use Amazon Smile.

Another option is to shop using iGive. When you set up an account with iGive and go through their portal to shop at more than 1,700 online stores, a portion of your purchases will be donated to the XLH Network. It is quick and easy, and, once again, you are simply making the same purchases you would make otherwise, but you are benefitting the Network at the same time! You can set up an iGive account here: Just remember to choose the XLH Network as your chosen organization.

Thanks for your support!

Wednesday, July 13, 2016

Breakthrough therapy designation for KRN23

Ultragenyx Pharmaceutical has received "Breakthrough Therapy" designation from the U.S. Food and Drug Administration (FDA) for KRN23 for treatment of XLH in pediatric patients.

This is not the same as getting FDA approval to make the drug available to patients outside a clinical setting, but it is an acknowledgment that KRN23 is the first potential treatment option in development for patients with XLH. The designation is intended to expedite the development and review process when the preliminary clinical evidence indicates that the treatment may demonstrate substantial improvement over existing therapies.

Getting this designation is encouraging news, since it removes some of the delays inherent in governmental reviews, while still providing for patient safety by carefully weighing the benefits and risks.

Tuesday, July 12, 2016

Texas XLH Day registration is closed

Texas XLH Day registration is closed.

We look forward to seeing everyone who's registered, and hope to meet even more people at future events.

Saturday, July 9, 2016

Last chance to register for XLH Day

Registration closes at midnight on Monday, July 11, 2016, so you're almost out of time! Don't risk missing the deadline -- register now at

Wednesday, July 6, 2016

Children and teens at XLH Day

If you're still debating whether to attend TX XLH Day, would it help to know that we're planning some great activities for children and teens? (And we'll also have infant care services.)

Board member Rachael Jones has been involved with the well-received children's activities at the last two XLH Days, and this year's program promises to be even better than before.

Rachael is working on parallel programs for children and for teens. The activities will include a mix of education and fun, teaching "the ABCs of XLH" and "healthy living." There will be opportunities to create art, participate in a science demonstration and attend a mini-carnival of activities. She's also planning small group discussions about living with XLH, led by a licensed mental health professional.

So, register now, for yourself and your kids: Registration ends soon, at midnight on July 11, 2016. Don't miss out on all the education and fun!