Get involved in Rare Disease Day 2020!

Rare Disease Day 2020 is on Saturday 29 February, the rarest day of the year. With just over five weeks until

the big day, now is the time to start getting involved and show support for the individuals and families affected by a rare disease!

The campaign is open to everyone around the world to get involved - people living with a rare disease, their families and carers, plus policy makers, public authorities, industry representatives, researchers, health professionals and the general public.

Through Rare Disease Day we want to raise awareness that:

Rare is many. Rare is over 300 million people around the world.
Rare is strong. The rare disease community is connected across borders and diseases to raise awareness and advocate for equity.
Rare is proud. Show your support for the rare disease community with pride! The likely truth is that you know somebody affected by a rare disease.

Download the official campaign materials

Download the official Rare Disease Day 2020 poster to put up at your workplace, home and school. The poster is created for you to use and adapt to your needs - editable versions are available so you can translate the text and add an organisation's name, event details and sponsor logos. This year's poster features Gauthier, who is living with sickle cell anaemia, and his mum.

Download the official Rare Disease Day logo. Display the logo at your events, on flyers, t-shirts and even cake - the possibilities are endless! You can also buy Rare Disease Day merchandise.

On social media:

Download the official Rare Disease Day social media cover photos and visuals.
Add the official Facebook frame or Twibbon to your social media profiles.
Download the infographic cards to share on social media.

Don’t forget to follow Rare Disease Day Facebook, Twitter and Instagram (new this year!) and use #RareDiseaseDay in all your posts so you are connected with others participating in Rare Disease Day 2020.

Take part in Rare Disease Day 2020

Last year thousands of events took place in a record 101 countries around the world! 2020 is also on track to be a huge success.

This year there are a record 60 national alliance official partners from around the world, as well as the many other patient organisations, hospitals, research centres, companies , policy makers and more that organise Rare Disease Day activities.

Be part of the global Rare Disease Day community:

Find an event taking place in your country.
Organise and post your own events on rarediseaseday.org.
Share a photo and your rare disease story on social media to show solidarity with people living with a rare disease. You can share individual photos of yourself supporting the campaign, with your friends or colleagues, or photos from your events. Paint and raise your hands. Print the logo and hold it up. Show your support in any way you want! See here for inspiration. Remember to use #RareDiseaseDay.
Become a friend of Rare Disease Day on behalf of your company or organisation.
Tell your rare disease story.
Upload your Rare Disease Day photos to rarediseaseday.org.

The facts about rare

Rare Disease Day is an opportunity to raise awareness of what rare really means and that people living with a rare disease need equitable access to diagnosis, treatment and care.

Use the key rare disease statistics below ¹ and these infographic cards in your Rare Disease Day communications. You can also add local statistics to make your Rare Disease Day advocacy messaging relevant to your local policy makers.

Over 300 million people around the world are living with a rare disease, each supported by family, friends and a team of carers that make up the rare disease community.
There are over 6,000 identified rare diseases.
Rare diseases currently affect 5% of the worldwide population.
Each rare disease may only affect a handful of people, scattered around the world, but collectively the number of people living with a rare disease is equivalent to the population of the world’s third largest country.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.
70% of genetic rare diseases start in childhood.
A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people.

The end goal - equity for people living with a rare disease

The long-term goal of Rare Disease Day over the next decade is increased equity for people living with a rare disease and their families. We need to raise awareness that people living with a rare disease around the world face inequitable access to diagnosis, treatment, care and social opportunity.

It's time to take action for people living with a rare disease to have equal opportunities to realise their potential.

EURORDIS events for Rare Disease Day

To mark the occasion of Rare Disease Day, EURORDIS is holding several events in Brussels: a policy event at the European Parliament (contact clara.hervas@eurordis.org for more info) , the EURORDIS Black Pearl Awards (watch online or purchase tickets to attend!) and the 29th EURORDIS Round Table of Companies Workshop on repurposing of medicines.

1. Research recently published in the European Journal of Human Genetics, article authored by EURORDIS-Rare Diseases Europe, Orphanet & Orphanet Ireland - Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. The analysis is of rare genetic diseases and is therefore conservative as it does not include rare cancers, nor rare diseases caused by rare bacterial or viral infectious diseases or poisonings https://www.nature.com/articles/s41431-019-0508-0

Eva Bearryman, Senior Communications Manager, EURORDIS

Page created: 22/01/2020
Page last updated: 23/01/2020