Today is the annual Rare Disease Day, a worldwide event to raise awareness about rare diseases and the impact they have on patient’s lives.

1 in 20 people will live with a rare disease at some point in their lives. There is no cure for the majority of rare diseases and many go undiagnosed.

For many parents of children with a learning disability, the difficulty in obtaining a diagnosis is an added complication. Whilst we know our children are more than a diagnosis, being able to put a name to symptoms can be comforting – knowing whether siblings might pass it on to their own future children. There are further support groups for parents, such as SWAN (syndromes without a name) and these can provide great support and an understanding community to meet parents in a similar situation.

Understanding is something Rare Disease Day aims to improve, increasing knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

To find out more about Rare Disease Day, please click here.