Patient organisations have developed from a shoulder to cry on to important tools encouraging families to engage in research.  They have merged from tiny groups in local communities, to national organisations, and on to a global movement of families, support groups and researchers; melting, bit by bit, the fear of the disease by the power of information and integration. The success of these organisations is exponential – as membership grows, more people are prepared to put their head above the parapet. These forces of trust and collaboration empower communication. Communication leads to understanding, understanding dilutes fear and thus more of that line that separates us. And the vacuum left by fear can be filled with hope. And this will all come quickest from global collaboration – diseases do not recognise countries’ borders, and nor should we.