Trusted Resources: News & Meetings
Latest announcements and gatherings
Mother, Natalie Sanchez, is new to the world of rare disease. At the age of two, her daughter was diagnosed with Hypophosphatemic Rickets.
Sanchez noticed that her daughter is smaller than most children at her age. At age two and a half, she is the same height and weight as Sanchez’s 11 month old son.
“They always confuse them for twins,” she says.
Alanna is constantly in pain after simple tasks like walking or lifting herself to get out of bed. She has severe bowing of the legs and takes her medications five times a day.
“She is a trooper! We are here to support her in anyway we can.”
To help bring awareness to her daughter’s condition, the Sanchez family has made their own Rare Disease Day at their oldest daughter’s school.
XLH LinkXLH Link is dedicated to provide educati...
My Hypophosphatasia – HypoGenek Foundationhttps://www.youtube.com/watch?v=jljjrEED...
XLH UKXLH UK is a charitable trust, founded on...
Beyond XLHBeyond XLH is an online disease-monitori...
Maya Helene Doyle, PhDDr. Maya Helene Doyle is an Assistant Pr...
XLH NetworkThe XLH Network was founded in November,...
Associação Nacional de Displasias Ósseas (ANDO)Associação Nacional de Displasias Óss...
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.