Latest News
Date: 26 Jun, 2017 Rare Disease UK are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “This project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. These activities will take place at events coordinated
Support this Inspirational Family! Please support Sue Manzoor whose beautiful niece, Maariyah sadly passed away in December, shortly before her 17th birthday. In Maariyah’s memory the family have decided to raise awareness of Alström Syndrome by running in the Great Birmingham 10K run on Sunday 30th April 2017. A HUGE THANK YOU to the family for supporting
Today, 28th February 2017 is Rare Disease Day. Rare Disease Day takes place on the last day of February every year to raise awareness about rare diseases and their impact on patients lives. There are many events which take place around the world. This year’s theme is ‘Research’ with the slogan ‘With research, the possibilities