Long-time Network member Marina Velazquez met with a pediatric nephrologist, Carmen de Lucas Collantes, MD, and five families living with XLH in Spain this past weekend, to share their experiences and learn more about treatment options around the world.
The families were from Madrid, Cordoba and Avila, and they met in the Hospital del Niño Jesús in Madrid, Spain. One of the major topics of discussion was whether treatment was any different in Spain than in the United States. They learned that the medical treatment itself is no different, but there are differences in the structure of the health care system. For one thing, it is more common for nephrologists to provide the treatment in Spain, whereas endocrinologists usually provide the treatment in the U.S. The more troubling difference is that the socialized medicine system in Spain limits where patients can go for treatment, so some patients don't have access to doctors with significant XLH experience.
You can see a picture of the five familes with Marina and Dr. Carmen de Lucas Collantes at our official facebook page: facebook.com/xlhnetwork