XLH Day

Save the Date: 9/10/11

Please join us for XLH Day
hosted by Greg & Arlene Iorizzo
and their family & friends.

Go to XLHDAY.COM for more details.

DO YOU HAVE X-LINKED HYPOPHOSPHATEMIA (XLH)?

A clinical trial is being conducted at several research centers to determine if an investigational agent from Kyowa Hakko Kirin Pharma, Inc. improves the health of adult patients by alleviating the complications associated with XLH.

Eligible participants will be provided study treatment at no charge and may receive compensation for their involvement.

To be eligible for this study you must:

• Be at least 18 years of age;
• Have been diagnosed with XLH; and
• Agree not to change diet or exercise routine for the duration of the study.

Phase I is a double-blind, randomized, placebo-controlled, single-dose, dose-escalation study of KRN23 in X-linked Hypophosphatemia. This first phase is intended to assess the safety and tolerability of KRN23 after a single intravenous or subcutaneous administration in XLH patients.

Phase II is a non-randomized, open-label study intended to assess the safety and efficacy of repeated doses of KRN23 administered subcutaneously in adult subjects with X-Linked Hypophosphatemia (XLH).

Contact any of the participating study centers below for further information.

PARTICIPATING STUDY CENTERS
DUKE UNIVERSITY MEDICAL CENTER DURHAM, NC:		Elise Pangborn, ph: 919-681-9192 Margaret Stewart, RN margaret.a.stewart@duke.edu
UNIVERSITY of INDIANA (IUPUI) INDIANAPPOLIS, IN:		Connie Sullivan, ph: 317-274-8431 csullivan1@iupui.edu
THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON:		Mary D. Ruppe, MD, ph: 713-500-6901 mary.ruppe@uth.tmc.edu

You can also find information about this clinical trial by going to www.clinicaltrials.gov and searching for "KRN23". Before deciding to participate in a research study, you may want to go to www.clinicaltrials.gov and read "Understanding Clinical Trials". As always it is a good idea to confer with your doctor and/or health care professionals before entering a trial.

Welcome to our new website

Look around: The XLH Network has a whole new look.

We redesigned our site to make finding information easier for both families encountering XLH for the first time, and for professionals and more advanced researchers, too.

Yet we still have all the features that help us support medical professionals and families alike:

• An index of up-to-date research, so you know what advances are coming.
• Summaries of symptoms and explanations of what XLH is and how you can cope with it.
• Access to families and researchers who are coping with this ailment.
• An easier way for you to contribute to the XLH Network, so we can help as many people as possible.

So look around. Study up. And consider joining, which gives you access to even more help.