Sunday 28 February 2021 marks the fourteenth international Rare Disease Day. The aim of the event is to raise awareness about rare diseases and the impact they can have on individuals – both patients living with disease and their families and friends who support and care for them.
The event was first launched in 2008 by EURODIS and its Council of National Alliances. EURODIS is a non-profit alliance between 956 rare disease patient organisations from 73 countries that join together in their work to help improve the lives of people living with rare disease in Europe.
There are 6000 diseases which are classified as ‘rare diseases’. Despite the name, they are experienced more commonly than one might expect; it is estimated that one in 20 people will be diagnosed with a rare disease at some stage in their life. The number of people suffering from diagnosed rare diseases in Europe is estimated to be around 30 million; globally, the estimated number is 300 million.
The difficulty for patients is that diagnosis can be tricky, with many diseases going undiagnosed. Some may receive a diagnosis, but only after years or decades of unexplained symptoms. For some, there is no cure even with a diagnosis.
By improving knowledge and spreading awareness of rare diseases and their impact amongst the public, the event aims to encourage researchers and those who make decisions regarding funding and allocation of resources to focus on the needs of those suffering from rare diseases.
Yann Le Cam, chief executive officer of EURORDIS - Rare Diseases Europe, sums up its mission: “Rare Disease Day has proved to have a lasting impact on social and policy development, creating an inspiring vision of the future and giving people living with a rare disease all over the world an opportunity to speak out and take action. It celebrates our collective strength with policy makers, researchers, innovators, clinicians, carers and helpers and all other stakeholders to be stronger together to provoke positive change for people living with a rare disease”.
This year’s campaign statement is ‘Rare is many. Rare is strong. Rare is proud.’ The focus is on reframing the word ‘rare’ and highlighting the experiences of those living with a rare disease and those caring for loved ones who are affected. The central message is that an individual is more than their disease.
EURORDIS and the National Alliance partners have developed, together with the marketing agency Shape History, promotional materials and the Rare Disease Day 2021 animated video to relay patient stories across diseases and borders.