This is the time of year when the LGDA focuses on two major events. Our annual #LGDAwareness Day on May 26 and the Million Dollar Bike Ride. Through our social media channels, you will have seen that the Million Dollar Bike was due to take place on the 13th of June in Philadelphia. Due toRead More

Our donors’ commitment is the fuel for our programs of research, education and support. Our path towards a better future for those living with GLA/lymphangiomatosis, GSD, and KLA would not be possible without their dedication! For Rare Disease Day, we hope that you will “Support Your Rare” by making a donation that will support theRead More

‘In 2018 the theme was Research.  Research is key.  It brings hope to the millions of people living with rare diseases across the world and their families’. We are celebrating Rare Disease Day. Working together with Rebecca Stewart from Rare Revolution Magazine we have managed to get some great articles, including our own, in theRead More

Interested in ‘Rare’? Then subscribe to this fantastic magazine ‘Rare Revolution’. A great educational and inspirational read for anyone involved in the rare disease community. Please take a moment to check it out. ‘Rare Science’ Alfie’s Trust is excited to be featured in the ‘Rare Science’ section (page 58-61) of this issue. Along with ourRead More