Rare Digital Disease Day 2021 : Online but together !

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on over 300 million patients’ lives. Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people in over a hundred participating countries. The event garners a great deal of media coverage and is an important moment in the rare disease policy calendar.

Because of COVID-19, Rare Disease Day may look a little different this year with digital campaigns and new online events. In 2021, Rare Disease Day 2021 will be held on 28 February 2021 with a global digital campaign highlighting key stories from 6 continents, 6 portraits, 6 heroes, 6 lives. Rare Disease Day is open to individuals, patients, patient organisations, health professionals, researchers, drug developers, and public health authorities. This year, there are many ways to participate, by downloading the communication materials, by participating in the Rare Disease Day campaign by tagging posts with #RareDiseaseDay, by becoming follower on Facebook, Twitter and Instagram, and by sharing photos or a story. Patient organisations can post an event and an organisation or company with an interest in rare diseases, can become a friend of Rare Disease Day to show their support and to join the 2021 global digital campaign, organised by EURORDIS with 60 National Alliance patient organisation partners across the world.

Several online events will be organised to raise the voice of rare disease patients in Europe in the lead up to Rare Disease Day 2021.

The multi-stakeholder Rare 2030 Final Conference will be held online on 23 February 2021, to present the Rare 2030 Foresight Study and its final recommendations for a better future for people living with rare diseases. The Rare 2030 Final Conference marks the end of this two-year foresight study and will be held in presence of high-level speakers, such as Member of Parliament Frédérique Ries, or European Commissioner for Health and Food Safety Stella Kyriakides. Breakout sessions will be organised to learn more about the Rare 2030 recommendations in detail and to learn how to use these in their advocacy, research and development, healthcare and policy work. A Knowledge Base Summaries, organised into 8 topic-based summaries for some background information about the subjects discussed, is available.

For the first time, the 10th annual EURORDIS Black Pearl Awards, celebrating exceptional achievements and leadership since 2012, will take place online on 24 February 2021, and will be open to the public. The Young Patient Advocate, the Visual & Audio Media and the Written Media awards will be open to a public vote. The 2021 awardees will be announced in the run up to 24 February 2021. The EURORDIS Photo Award 2021 will also be presented, with submissions open until 31st January 2021. The first 2021 EURORDIS Member Award recipient is AKU Society for their 17 years of outstanding advocacy and research in the rare disease field. It acknowledges the organisation’s groundbreaking achievements in the rare disease community, such as DevelopAKUre and Patient-Centricleadership.

The first Rare Disease Week, to be held virtually from Brussels from 22 February to 25 February 2021, will take a dedicated group of European rare disease advocates through a week of training and engagement with policy makers at the European Union to understand how they can strengthen their advocacy efforts at both national and European levels. The Rare Disease Week will be made up of events including training, meetings with policy makers and networking events, to present a strong and united message to Members of the European Parliament and other policy-makers in Brussels on behalf of the rare disease community.

Find out what is going on in your country to mark Rare Disease Day and get involved in this unique moment in the rare disease community’s calendar.

(source: OrphaNews January 22, 2021)