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Rare Digital Disease Day 2021 – lots happening in Europe!

noviembre 2020

100 Days to RDD

Rare Disease Day may look a little different in 2021 because of COVID-19, but through digital campaigns and new online events for you to participate in, we can come together to shine a light on an estimated 30 million people living with a rare disease in Europe and over 300 million worldwide.

At EURORDIS-Rare Diseases Europe, we are excited to announce several landmark online events to raise the voice of rare disease patients in Europe in the lead up to Rare Disease Day 2021. And you are invited!

We want to thank the members of the rare disease community and beyond for the massive impact we have made with the EURORDIS Black Pearl Awards celebrating exceptional achievements and leadership since 2012. This year, watch live on the night as the public votes for the first time for three of the awardees!

As a springboard for the change that we want to see over the next decade, the Rare 2030 Foresight Study will present their final recommendations for a better future for people living with rare diseases in a multi-stakeholder conference that you will be able to stream.

Wherever you are, we urge you to come forward to show your colours for Rare Disease Day on 28 February 2021. Rare is many. Rare is strong. Rare is proud.

Save the dates!

We invite you to join us at two important virtual events on the occasion of Rare Disease Day 2021, plan your own celebrations, and find out more about our very first Rare Disease Week!

Rare 2030 Final Conference

Tuesday 23 February 2021, online

What is the Rare 2030 Final Conference? This will be the climax of the Rare 2030 Foresight Study in rare disease policy where the long-awaited recommendations will be presented. Thousands of people with rare diseases and 250 experts from across the field have contributed to this unique piece of work that recommends a road map for the next ten years of rare disease policy.

Who should attend? This is a must for everyone in the rare disease community. You will gain valuable insight into how we – in our countries, disease areas, and at a European level – can drive change for people with rare diseases.

Why should you attend? Our current policy framework in the field of rare diseases has fostered tremendous progress for many of us. At this event we must now come together and take ownership of a more modern framework to ensure that we build on this!

Give me one more reason… Because #2030startsnow! We cannot predict the future, but we can prepare for it to ensure it is designed to improve the lives of people with rare diseases.

How can I join? This event will be live streamed so that you can see the vision unfold. Sign up to receive registration links when open!

For more information, visit

EURORDIS Black Pearl Awards 2021

Wednesday 24 February 2021, 17.00 -19.00 CET, online

What is the EURORDIS Black Pearl Awards? Every year we come together to celebrate excellence and leadership in driving change for a better future for people living with rare diseases. 2021 will be the tenth anniversary.

Who should attend? Anyone who wants to be inspired! Whether you are living with a rare disease or work in the field, join us with your family, friends and colleagues to celebrate the accomplishments of the rare disease community and the outstanding people making a difference.

Why should I attend? For the first time this event is going to be online and open to the public! But this is not going to be your standard webinar: we will put on an interactive show and a celebration for you to enjoy from the comfort of your home.

Give me one more reason… You will have the chance to vote for your winner across four categories as a great new feature of this event: the EURORDIS Photo Award, the Young Patient Advocate Award, and both the Written and Visual Media awards.

How can I join? Registration will open in January so that you can join this interactive event. To be the first to hear more, sign up here.

For more information, visit

Rare Disease Day

28 February 2021

What is Rare Disease Day? Every year Rare Disease Day shines a light on an estimated 30 million people living with a rare disease in Europe and over 300 million worldwide. EURORDIS organises this global campaign with 60 National Alliance patient organisation partners across the world.

Who should get involved? This global awareness campaign connects people with rare diseases from over 100 countries. Whatever your reason to support the awareness of rare diseases, it’s easy to show your support!

Why should I get involved? We need our voice to be even louder this year following the huge impact of COVID-19 on the community: no one with a rare disease should be left behind.

Give me one more reason… We are creating adaptable materials that will make it easy for you to show your support while telling your story in your own language and with your own pictures.

How can I join? From sharing your story on social media to illuminating the iconic buildings in your country, there are endless ways to get involved! Sign up to the Rare Disease Day mailing list to receive the campaign tools to get started!

For more information, visit

Rare Disease Week

Monday 22 February – Thursday 25 February 2021, closed event

What is Rare Disease Week? A brand new initiative for 2021, Rare Disease Week 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.

Who will be involved? Over 30 patient advocates from 19 countries have already started preparing for our very first Rare Disease Week. We look forward to introducing you to them and sharing their progress!

Why have we launched Rare Disease Week? This is a key part of our advocacy plan to mobilise policy makers in Europe to maintain rare diseases as a public health priority.

For more information, visit

Jenny Steele, Communications Manager, EURORDIS

Traducteur : Trado Verso
Übersetzer: Peggy Strachan
Traductor: Conchi Casas Jorde
Traduttrice: Roberta Ruotolo
Tradutores: Ana Cláudia Jorge e Victor Ferreira
Перевод: Talkbridge