Rare Disease Day 2021: Share your colours

Six portraits of people living with a rare disease

The fourteenth Rare Disease Day, to be celebrated this year on 28 February, will see thousands of people in all parts of the world connect virtually to advocate and raise awareness for people living with a rare disease.

EURORDIS, the 62 National Alliance patient organisation partners and hundreds of other patient organisations from over 100 countries have collaborated to ensure that the voice of people living with a rare disease continues to be heard and acted upon by the global community, amid the coronavirus pandemic.

The central message of this year's campaign "Rare is many. Rare is strong. Rare is proud" focuses on reframing the word 'rare', representing over 6000 rare diseases, as well as the different aspects of people's lives and experiences of living with a rare disease. It seeks to remind us that we are more than our disease and that our potential is not limited by what we alone can achieve.

While each rare and complex condition may affect only a small number of patients, rare diseases are a global concern, affecting an estimated 300 million people worldwide. On this Day, we come together to show support, connect, share, and build a sense of belonging so that no person living with a rare disease is left behind. Together, we are a global community that cares for one another.

To relay patient stories across diseases and borders, EURORDIS and the 62 National Alliance partners have developed with the marketing agency Shape History multilingual, high-quality promotional materials and the Rare Disease Day 2021 animated video, translated in thirty-seven languages.

The video shines a light on the triumphs and the challenges people with rare diseases worldwide face in their everyday life. It puts six rare disease patient stories in the spotlight. They live in Australia, Malaysia, Brazil, Norway, Kenya, and the United States. They are young; they are mature. They are explorers, cartoon lovers, and gourmets. They are more than their disease. Though they may have their differences, there is one thing that unites them – their 'rareness', and that is what makes us all heroes! Tell your story and show your support by sharing the video with a hashtag #RareDiseaseDay.

“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”, says Yann Le Cam, Chief Executive Officer, EURORDIS-Rare Diseases Europe

Celebrated on the last day of February, Rare Disease Day brings together 62 National Alliances in 57 countries, who build and champion the campaign globally and in their region. Rare Disease Day is coordinated by EURORDIS with the support of AFM-Téléthon, the Chan Zuckerberg Initiative, and the Health Programme of the European Union.

Since its launch in 2008, thousands of events have taken place worldwide, reaching millions of people and actively engaging national and international decision makers and media to champion the issue, from Peru and the United States, through to France, Tunisia, and Singapore.

To help create a global focal point worldwide, Rare Disease Day is encouraging volunteers to light up monuments across the world, which we will use to highlight our links across borders. To help mark the occasion of Rare Disease Day in Europe, EURORDIS is organising two landmark online and free of charge events: the Rare 2030 Final Policy Conference on 23 February, to shape future policy directions in the rare disease community, followed by the Black Pearl Awards ceremony on 24 February, to celebrate the inspirational of people living with a rare disease, along with those who go that extra mile to make a difference to their lives.

Collectively we can bring about change and create a better world for all. No matter where you live, get involved by promoting the Rare Disease Day campaign and amplifying the voice of people living with a rare disease:

- Tell your story and send a message of solidarity on our website

- Share the Rare Disease Day official video with your network

- Download campaign materials for social media

- Illuminate a building to raise awareness for rare diseases

For more information, please visit rarediseaseday.org.

 


Stanislav Ostapenko, 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

Page created: 17/02/2021
Page last updated: 15/03/2021
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases