Prader willi nederland

My daughter hazel is 1.5 years old born with prader willi syndrome. 

We are doing an action to bring awanress to prader will syndrome. As most already know this one of the few rare syndromes where hazel is missing a small portion of her chromosome 15. 

Currently they approved a medication in america they are hoping to bring to Europe to curve the hunger feeling people with prader willi have. This hasn't been brought to Europe yet beqcuse of the strict laws they have when it comes to medications and what they are and arr not allowed to use. 

What we do know is that in Europe they are currently looking at what they came up with in america and try to mimicke the medicine here. That way they follow the laws but we have the opportunity to use it here as well. This medication for anyone with prader willi is amazing to have since this is one of the biggest problems….they feel hungry 24/7….no matter if they just ate or not. This is one of the many reasons you see so many with the syndrome having obesity issues (not the only reason but it definitly plays a part).

So we are trying to reach our goal.300 euros to donate to prader willi nederland. This helps them do more research to better the lives of our loved ones with pws (it goes towards things like studies..or meetings with other professionals and things like this).

So our goal is to raise 300 euros to donate to this stitching.