FRIDAY, OCTOBER 5TH
9:00 - 3:30 P.M.
HYATT REGENCY BALTIMORE INNER HARBOR
This is an extraordinary year for our community, so in addition to XLH Day, we are planning an event that will document what life is like for adults with XLH (and other forms of hypophosphatemia). We know how hard it can be to convince the medical community that adults with XLH really do have debilitating symptoms and that XLH is a whole-life, whole-body disorder. This event is finally an opportunity for us to educate others.
Representatives of the U.S. Food and Drug Administration will be there to listen, along with clinicians, researchers and other patients.
The goals of the symposium are to:
1. Educate patients, caregivers, and clinicians on the progression of hypophosphatemia.
2. Promote better understanding of the treatment end-points that matter most to adults with hypophosphatemia.
3. Help everyone understand how treatment end-points change as adults age.
Following the symposium, The XLH Network, Inc. will compile the information received from the panel and the audience as well as results of a survey among members. This information will then be available to the FDA, the medical community, and to our network members. We want to ensure that everyone involved with treating hypophosphatemia has the resources to understand the range of how it affects adults, what we most need as patients, and how they can assist us in obtaining positive treatment outcomes in the future.
In other words, we want to #SetTheRecordStraightXLH
• Attend the October 5th meeting: There will be a morning and afternoon panel of 5-6 patients each. This will be a facilitated discussion with panelists sharing the impact of hypophosphatemia on their lives. Audience members will be encouraged (but not obligated) to contribute by asking questions and sharing their own experiences when applicable.
• Submit your stories and comments to The XLH Network, Inc. You can do this in several ways: send an email to us at firstname.lastname@example.org, send or post a message to us on our Facebook page, or submit a story right here on our website by following the link below.
• Take the Survey: Click here to answer a few short questions that will help us compile data prior to the Symposium. This will be combined with the information we gather at the meeting and be included in our Voice Of The Patient report.
Pictures, videos, and special stories, etc., are all encouraged.
There is no charge to attend the Symposium, and everyone is welcome. While we hope you will also attend XLH Day, attendance at XLH Day is not required to attend the Symposium.
Pre-registering for the Symposium will help us plan for space and refreshments.