Thursday, December 20, 2018

XLH Network Board President Message 2018 - Bill Coogan

It's not often that something life-changing happens to an entire global community, but that can be true for XLHers of all ages in 2019. Next year may see more approvals, all around the world, of the first-ever treatment for XLH (and the related hypophosphatemias) that gets at the root of the problem (phosphate wasting).

But the treatment will only help if the relevant people know about it! Our next big challenge will be to continue to reach everyone in both the patient population and the medical community and to continue to educate all about the realities of living with XLH, why treatment is absolutely necessary and what the treatment options are.

Presently, there's a big disconnect between what the XLH experts know and what's happening in the day-to-day treatment of XLHers by non-experts. While some medical providers are current on their understanding of XLH, there are far too many instances of uninformed medical providers telling patients that there's nothing that can be done to help them (or that their symptoms are unrelated to XLH). Some patients can challenge the bad advice, but may not be able to find any better medical provider, depending on where they live. Or they may lack the knowledge or the resources to successfully challenge their medical providers' statements.

We plan to work on both sides of this scenario. Some initiatives will focus on educating the medical providers so they'll give better advice, and other projects will focus more on educating the patient community about current options so no one will be discouraged by outdated advice.

In this regard we conducted a Patient Focused Drug Development Event in Baltimore, MD on October 5, 2018. It was well-attended by XLH patients, members of the FDA, and XLH medical professionals. The event was highly informative for all. Patients and doctors shared their stories via panel discussions and videos. All left with a better understanding of XLH being a life long disorder.

Looking ahead to 2019, for the health care providers side of the equation, we'll be attending more medical conferences, including possibly going to the meetings of the American Association of Nurse Practitioners and the Endocrine Society Conference. We will also be updating our Clinician's Guide and other XLH materials to distribute at medical conferences.

For the patient side of the equation, we'll be creating and sharing some short videos by experts on various aspects of XLH and updating our patient materials. Plus in 2019, we will be conducting 3 regional meet ups. The first location in 2019 will be Columbus, Ohio on March 30th. More details on all 3 regional events will be shared as particulars are developed. Each will be an excellent opportunity for patients and medical professionals in the region to meet and discuss x-linked hypophosphatemia.

But first, we need to be sure we have the resources we need to carry out these initiatives at a very critical time for the XLH community. Many gave on #GivingTuesday (November 28th) and we want to thank you all for your support! If you were not able to give, you are still able to give by December 31st and have your tax-deductible donation be counted in 2018. Consider giving the gift of HOPE to XLH patients and providers!

Donations can be given here:

Have a Happy New Year! We hope to see many of you at our regional meet ups in 2019!

-Bill Coogan
Board President
The XLH Network, Inc.