Less than 50 families worldwide who have a child with Warburg Micro Syndrome are in touch via our WMS Facebook Group. This condition is so rare there are only 1 in 230,000,000 of the population. There are a handful of Researchers around the world trying to narrow down what genes are involved but we have relatively little practical Information with which to help us look after our children - our 'Smilers'. We owe it to our children to try and improve the prognosis Information available to us not only now but for future families. Our children are unique and so very precious ! We want to produce a Handbook that we update regularly - publishing it in several languages so families can have a copy and can also share this with their medical professionals in their own countries. The professionals we see have never seen another patient with WMS so it is vital that they have accurate information to be able to treat our children. We have families from as far as Arizona to Australia and from Iceland to the UK - we are spread across the world. There is no one else to do this - no funding out there - no research other than diagnostic testing - we have to do this for ourselves ! A few families are meeting-up in America in 2017 and hopefully in Europe in 2019 and this will help collection of as much data as possible so we can build the content of this Handbook ... PLEASE HELP US help our Smilers
[For more WMS info > www.warburgmicrosyndrome.org]