Genetic Alliance Building Rare Communities Workshop
The charity was invited to speak at the Genetic Alliance Building Rare Communities Workshop on the 4th February 2017. We were asked to talk about how the charity was founded and grown over the last five years and to give tips to people thinking about setting up a charity.
It’s nice to look back to see how far we have come in just over those years – we are close to a trial buy prednisone online starting, we have a patient registry, diagnosis packs, mobile apps, family conferences, support network, helped set up charities in Europe, and much, much more. Before this ,families in the UK would get a diagnosis and feel isolated. With our amazing supporters we have changed all this and there is a lot more to come!
Photos from the event