Be the first donor to support THE XLH NETWORK INC!
Rare Disease Day is February 28. My family is affected by a rare disease called X-linked hypophosphatemia (XLH). I was diagnosed with XLH (Then called Vitamin D Resistant Rickets) at age 2. XLH is a whole-life, whole-body disease that at present has no treatment that addresses the underlying cause of the illness. That may all change in 2018 and I am asking you to join me in making sure The XLH Network, Inc. has the resources it needs to serve the patient community.
The XLH Network., Inc. is the only patient advocacy organization in the world dedicated to serving those living with XLH. It has been an invaluable resource to me and my family and works hard to provide resources to patients, family members, clinicians and researchers. Up until now, there has been no treatment for XLH that addresses the underlying cause of the illness but with a new promising drug in clinical trials, that may all change this year! It's so appropriate that the theme of this year's Rare Disease Day is research and I want to help make a difference for the XLH Community. That's why I created a fundraiser to support THE XLH NETWORK INC. I want to help provide hope for the future and I know you do too!
Check out my fundraising page and please consider making a donation to help me reach my goal of $1000.
Giving online is easy and fast, and your support will make a real difference. I appreciate your help!
#XLHPatient & #XLHWarrior