Reason #5... It's easy. To get started, just click here: or go to https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK
Reason #4...If everyone does it, I'll stop pestering you about it, and we can talk about something more fun like chocolate and parties.
Reason #3...You can be a part of history. This survey has the potential to be the first-ever comprehensive collection of XLH patients' symptoms and related conditions. (Alternatively, or in addition, if you were a patient at Shriners' Hospital, they are recruiting their "graduates" -- adults who were treated there as children -- for a follow-up study, which you can read more about here: http://xlhnetwork.org/files/9613/9931/2887/Graduate_Study_Flyer_Edited2_1.pdf)
Reason #2...You'll be helping to pave the way for better treatment for yourself, as an adult with XLH. Once there's a database correlating our symptoms with XLH, you're less likely to get weird looks from your doctor when you mention your wide array of symptoms, and you won't have to keep asking, "Is this new symptom related to my XLH?" because you'll be able to look up the answer in the published results, or refer your doctor to those results.
Reason #1....and this is really what it's all about .... you'll be helping to pave the way for better treatment for your children and grandchildren. Especially if you have minor children, and can enter their information into the survey, you'll be helping to provide much-needed information that all future pediatric patients will benefit from. The more participants there are in the study, the more the scientists can learn.
As always, the XLH Network, Inc. does not endorse or critique specific medical research, and does not counsel individual patients either for or against participation in any specific medical research. Prospective volunteers should always carefully review the medical research's informed consent documentation (which is included at the survey site), and discuss the pros and cons of their participation with trusted advisors, including their health care providers and family members.