Finding out your son or sons have a life taking medical research condition is one of the hardest things any family will take on. To have no useful easy to understand literature on the condition makes it even harder. This project looks to address this.
It ran from to
XLP is a rare life taking condition. Googling XLP will bring up an array of medical publications that are difficult for any non medical person to interpret - especially if English is not a first language.
By translating family frendly material from English into other languages. We have already undertaken this for some lanaguages and the response back from XLP affcted families has been 100% supportive.
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