Rare Disease Day was launched in 2008 by EURORDIS, an alliance of patient organisations, and its Council of National Alliances, starting as a European event. It is now a major international event celebrated by rare disease organizations across the globe with the participation of over 100 countries in 2019.
Rare Disease Day is celebrated every year on the last day of February, a “rare date”, to raise awareness of rare diseases and its impact on people’s lives amongst the general public and decision-makers. This year’s thirteenth edition took place on Saturday 29 February across the world around the following theme: RARE IS MANY, RARE IS STRONG, RARE IS PROUD.
It is important to take part in this initiative because rare is actually not so rare. It is around 300 million people worldwide living with one or more of the 6000 rare diseases which represents 3.5% – 5.9% of the worldwide population. In Europe, around 500,000 people are affected by a rare neurological disease and this number continuously increases.
Every year, the global campaign happens before and on rare disease day with awareness being raised offline and online via numerous ways: putting up a poster in your local community, sharing your rare disease stories and pictures on social media by using the #RareDiseaseDay and tagging @rarediseaseday (official twitter account) and organizing events and talks on rare diseases. At the beginning of each year, everyone unites and shows their support for people affected by rare diseases, wherever they are.
The European Reference Network for Rare Neurological Diseases (ERN-RND) is a virtual network of expert European hospitals and clinicians which aims to facilitate access to highly specialized healthcare for patients with rare neurological diseases. One main activity is to share knowledge via an online secure E-consulation platform called the Clinical Patient Management System (CPMS) in order to support rare neurological disease patients in getting a timely and accurate diagnosis, treatment and care. And of course, we are rare disease day friends and show our support every year!
As part of this campaign, Dr Holm Graessner, ERN-RND coordinator and Managing Director of the Center for Rare Diseases in Tübingen, Germany gave an opening speech at the South Germany Rare Disease Day (Süddeutscher Fachtag der Seltenen Erkrankungen) on 29 February in Ulm, Germany. It was a great opportunity to emphasize the value of networks for research and healthcare of rare diseases.
In addition to this, Dr Sanja Hermanns, CPMS helpesk & training manager, gave a talk at the Rare Disease Day event in Mainz, Germany co-organised by one of ERN-RND’s patient advocates, Marek Parowicz from AHC18+ e.V. The presentation was about the European Reference Networks and the added value for the care of rare disease patients in Germany.
Finally, in January, ERN-RND patient advocates visited the coordination centre’s office in Tübingen and we took the opportunity to all wear our rare disease day t-shirt during the whole day and take a nice group picture “showing our hands” in support of the rare disease community.
Next year, Rare Disease Day will take place on 28 February 2021, mark the day in your calendar, join the rare disease community and show you care!