Rare is many. Rare is over 300,000 people in Ireland.

Rare is strong. The rare disease community joins together across borders and diseases to raise awareness and advocate for equity.

Rare is proud. Show your support for the rare disease community with pride!

Reframe Rare

This year Rare Disease Day 2020 is on Saturday, February 29th – a very rare day indeed!

Building on 12 years of success, in this the 13th year of celebrating Rare Disease Day, we are in a new phase, seeking increased equity for the rare disease community. The campaign message “reframes” perceptions of what it means to be ‘rare’ so that no one is left behind. We must re-double our efforts to show that rare isn’t scarce, rare isn’t infrequent, rare isn’t remote.

It is estimated that there are at least 300,000 individuals in Ireland living with at least one of the up to 8,000 described rare diseases.* In fact, there are more than 300 million patients (a figure approaching the population of the United States, the 3rd most populous country in the world), each supported by family, friends and a team of carers, that make up the rare disease community worldwide. 

Although you may not know it, you probably already know some of the 1 in 16 people affected by a rare disease in Ireland. We all need to understand that people living with a rare disease in Ireland face inequitable access to diagnosis, treatment and care. It’s time to show your support for people living with a rare disease!

Rare Disease Day 2020 events

This year, a RARE year, we have a number of events planned with our members and partners in the rare disease community:

  1. Launch of a new and revised Rare Disease Guide – the first Easy Guide to Rare Disease in Ireland was published in 2013. Under the management of the Rare Disease Taskforce the Guide is being refreshed with new and current stories of people living with a rare disease in Ireland in 2020 and with up to date statistics and information for the rare disease community and everyone in Ireland. If you would like to have your story included in the guide please contact advocacy@rdi.ie
  2. All island North-South Conference on Rare Diseases, Friday, February 28th, Riddel Hall, Queen’s University, Belfast – this event is open to all – REGISTER HERE. There is a poster competition at the Conference – POSTER COMPETITION.
  3. Family Rare Disease Day Party, Saturday, February 29th hosted by President Michael D. Higgins at Áras an Uachtaráin. One of Ireland’s Rare Parents, a Dad of 2 boys with an ultra-rare condition, has worked hard to advocate for his children and other children in a similar situation. In his travels he met with President Higgins and convinced him of the merits of hosting a party at his home to celebrate the diverse rare disease community of Ireland on Rare Disease Day. We are grattful to him for all of his hard work and President Higgins for agreeing to host this party. This is an invitation only event.

Get involved in Rare Disease Day 2020

  1. Organise an event during or around the month of February for Rare Disease Day to raise awareness of rare diseases in your community. Let us know about your event (advocacy@rdi.ie) and we’ll post it on our website. Share your event on the rarediseaseday.org website so it can be added to the map showing events taking place worldwide for Rare Disease Day. Use the official Rare Disease Day download materials when promoting your event. Share your event with local or regional newspapers and radio stations to get coverage.
  2. Share a photo (with painted hands) to show solidarity with people living with a rare disease in your community! Share the photo on social media using #RareDiseaseDay #ShowYourRare and tag @RareDiseasesIE.
  3. Tell Your Story – Raise awareness about rare diseases and their impact on peoples’ lives by sharing your story of living with a rare disease or caring for someone that does. Write your story or make a video. Share your story on social media. Share your story with local or regional newspapers and radio stations. Share your story with us (advocacy@rdi.ie) and we will help to spread your message.
  4. Famous faces – Know someone famous? Ask them to join the rare disease cause and show support for Rare Disease Day by sharing a #RareDiseaseDay post on social media. Take a photo with them and share it on social media using #RareDiseaseDay #ShowYourRare and tag @RareDiseasesIE. Don’t forget to tag your Famous Face in the photo too!
  5. Add the official twibbon and Facebook frame to your social media profiles!
  6. Use the Rare Disease Day logo – print the logo on flyers, t-shirts and even cake – the possibilities are endless!
  7. Use key rare disease statistics to share the message that rare is many to the media and policy makers. Advocate to policy-makers that people living with a rare disease need equitable access to diagnosis, treatment and care.
    1. 300,000 people living in Ireland with a rare disease
    2. Over 6,000 different rare diseases
    3. 72% of rare diseases are genetic
    4. 70% of those genetic rare diseases start in childhood