Eurordis has recently launched a campaign and petition to make 2019 the official European Year for Rare Diseases. Sorsha joined their webinar to find out more about the campaign. In this week’s blog she talks about what she learned, and why it is valuable for rare disease groups to get involved.
Eurordis is an organisation which brings together patient organisations and rare disease advocates across Europe, representing them in a campaign to improve the quality of life of all people with rare diseases. They do this by helping patient groups to network, supporting research into treatments and the social impacts of rare disease, and raising awareness to try and influence policy decisions.
Eurordis started this campaign to raise public awareness about rare diseases, and to emphasise the importance of treating them just as seriously as more common diseases. They also want to reach out to policy makers in governments across Europe so real change can be achieved for rare diseases.
During the webinar Eurordis emphasised the year for rare diseases is not a Eurordis event. Whilst Eurordis are starting the awareness campaign, they do not take ownership of it. They want everyone to get equally involved and treat the campaign as their own. This is another reason Eurordis have launched this campaign; they want the rare disease community to pull together for this common goal, giving us a louder voice.
The campaign is planned in three steps. The first has already started, and is between 2013-2015. This stage is all about building support, and getting other rare disease groups and patient advocates to work together, and take ownership of the campaign. The second stage will be from 2015-2018, and will be focused on changing policy. This stage is important, as it will make sure there are some real changes to be seen when we reach the final stage. This final stage is the year for rare diseases itself- 2019.
Rare diseases are often ignored and overlooked despite affecting the lives of thousands of people across Europe. Having a year dedicated to rare diseases would be a fantastic way to bring this issue to people’s attention. Not only would it raise the profile of rare diseases in the eyes of the general public, it would also show policy makers the true scale of the problem. Having a year of rare diseases across Europe would make governments see they cannot ignore this issue. We certainly think this is worthwhile.
But how do you get involved? You can start by signing the petition to make 2019 an official year for rare diseases. Eurordis have a great page on their website full of resources you can use to show you are a supporter of the campaign, from the campaign logo to a template letter to send to policy makers. There is even a link to the webinar! You can also just spread the word about the campaign by writing a blog like this one, or telling other rare disease advocates to get involved.