With Rare Disease Day just three days away, we are already getting ready to campaign, celebrate and raise awareness. In today’s blog we explain what Rare Disease Day is, and how you can get involved.

Awareness

Rare Disease Day happens on the last day of February each year. This is a rare day, and its purpose is to raise awareness about rare diseases and the people they effect. Raising awareness is very important, not only to enhance understanding among the general public, but in order to influence policy makers and make real change.

Events

Each year thousands of events take place across the world, reaching out to many people and raising awareness through the internet, and in the media. It began as a European event in 2008, but has since spread to the USA, and across the world, with 84 countries getting involved last year.

As usual, this year there are plenty of events being held, and we are attending several of them.

Today

Today our team will be at a Rare Disease Day event at the House of Commons in London. This event is organised by Rare Disease UK, and is part of a series of parliamentary events throughout the UK. The aim is to raise awareness, especially amongst policy makers, in order to put rare diseases firmly on the political agenda.

Friday

On Friday the team will be attending two different events. The first is a scientific conference in London on drug repositioning for rare or fundamental diseases. This event is organised by Findacure, and will feature several speakers giving practical advice on how to get involved in different types of drug repositioning research, and how it could benefit rare disease patients.

The second is at Royal Holloway University in London. Royal Holloway is a leading institution in the development of new therapies for rare diseases, and has worked on diseases including Spinal muscular dystrophy and Duchenne muscular dystrophy. The day aims to educate young people about rare diseases, and the work being done to develop treatments for them. We will have a stall in the exhibition zone, and are looking forward to teaching more people about AKU!

An Exciting Launch

We will also be launching our new elearning module about AKU for Rare Disease Day. We have developed this with the Royal College of General Practitioners (RCGP), and it will be freely available from Friday on their website. We are very excited to start promoting it to healthcare professionals in order to raise their knowledge of AKU, and improve rates of diagnosis. What better day to mark the launch than Rare Disease Day!

Get Involved

Whether you are attending an event or not, there are plenty of ways you can get involved with Rare Disease Day:

  1. Raise and join hands – Upload a picture of you raising and joining hands with others to show your support and solidarity to rare disease patients around the world.
  1. Tell your story – Tell your rare disease story and share it with others by uploading a photo or video to the Rare Disease Day website.
  2. Raise awareness – Spread the word about rare disease day over social media. The easiest way to begin is by signing the Rare Disease Day Thunderclap to help create some noise on social media!
  3. There are plenty of other ways you can get involved too. Just check out the Rare Disease Day website to find out more.

Look out for our blog next week on how Rare Disease Day went!