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Rare Disease Day 2024: Unite for change! Unite for equity!

February 2024
Graphic that reads: '29 Feb 2024 - Rare Disease Day, Share Your Colours'.

On Thursday 29 February, we will mark Rare Disease Day 2024.

The Rare Disease Day campaign will return to its paramount and perennial theme: achieving true equity for 300 million people across the world who live with a rare condition.

Since last year’s campaign, the world has seen a great deal of progress on rare diseases. Last September, ministers, leading advocates and even royal representatives, from all corners of the globe, declared at the United Nations Headquarters their commitment to universal health coverage for all people living with rare diseases.

But our global community needs to reinforce this momentum of change and progress, and 2024 marks a vital year.

In 2024, an unprecedented proportion of the global population, including EU citizens, will be voting in elections. The future actions of global policymakers on rare diseases will partly hinge on the strength and clarity of our collective voice through the Rare Disease Day campaign.

In Europe, there is growing momentum for a comprehensive European Action Plan for Rare Diseases, supported by robust EU policy initiatives and concrete objectives. Various European nations are also progressing with their national strategies to tackle rare diseases.

During the October conference on rare diseases in Bilbao, organised by the European Economic and Social Committee and held under the auspices of the Spanish EU Council Presidency, delegates concluded that a European Action Plan for Rare Diseases was necessary. Later that month, Stella Kyriakides, the European Commissioner for Health, asserted that the European Commission was capable of launching a highly-resourced and coordinated EU strategy on rare diseases, similar to the strategy the Commission had launched for cancers in 2021.

We at EURORDIS will be leveraging the occasion of Rare Disease Day to make sure that this political trajectory towards collective European action on rare diseases is maintained.

Later this month, Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, will attend an event marking the occasion in the European Parliament, where he will reiterate the need for a unified health strategy.

On Thursday 29 February, Rare Disease Day itself, we will launch our #ActRare2024 campaign, which outlines the European rare disease community’s eight key policy demands for the EU’s next cohort of decisionmakers, ensuring the momentum for change continues.

But how can you get involved with Rare Disease Day 2024?

We look at the various that ways you, your family, or your organisation can engage with the campaign to improve the lives of the rare disease community worldwide.

How to get involved

Whether it’s planning a local event or joining an existing one in your community or country, your involvement is key.

Plan and add your own event to the Rare Disease Day global map, and check whether there are any organised events that you can join!

Light or decorate your home with the Rare Disease Day colours at 19:00 your local time on 29 February 2024.

You can use garlands, social media filters, candles, disco lamps, colourful decorations. The most important thing is to let your creativity shine!

We suggest you take a picture of yourself with the illuminations or decorations you chose and publish it on your social media using our Global Chain of Light filters, and the hashtags #RareDiseaseDay and #LightUpForRare.

If you live with a rare disease or are close to someone who does, share your journey with the campaign!

You can also read others people’s stories from around the world to get inspired, or listen to stories featured in our latest bonus podcast series as part of the global campaign: Rare on Air Stories.

These stories not only raise awareness of the unique and shared struggles faced by those living with rare diseases, but also celebrate the resilience and strength that define our worldwide community.

The campaign hosts a huge and diverse toolkit of resources that are free for you to use! Check them out!

For social media, you can download social media cards, profile frames, Instagram filters, infographics, and our campaign poster.

To help you with your efforts to raise awareness among those who may not be familiar with rare diseases and the global toolkit, take a look at the campaign’s Equity Toolkit.

This Toolkit helps explain why equity is the campaign’s main focus, and is designed to educate and inspire action towards fair opportunities for all, based on individual needs and aspirations.

The campaign also offers bespoke school toolkits, designed for various age groups. These school toolkits aim to educate children and teenagers about the challenges of living with a rare disease, cultivating empathy and understanding early on.

Join the Campaign!

Rare Disease Day 2024 on 29 February is set to be the largest yet, boasting unprecedented participation from organisations worldwide.

However, success hinges not only on its coordination, but keen and active involvement from the community.

Your participation is key. Get involved today!

And do not forget to follow the campaign on X, Facebook, LinkedIn, and Instagram!

Julien Poulain, Communications Manager