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!
Equity: equitable access to diagnosis, treatment, health, social care and opportunity.
Show your support:
– Feb 27 #RaiseA Toastie
– Feb 28 #LightUp4RD
Adam King has partnered with us to #RaiseAToastie and raise awareness for people living with rare conditions across Ireland on Sunday Feb 27 ahead of Rare Disease Day. Create your favourite or most unique toasties with friends and family and share them on social media using the hashtags #RaiseAToastie and #RareDiseaseDay to create awareness of people living with rare conditions in Ireland. Don’t forget to donate to support the work of RDI.
RDI will be giving one lucky participant a Conservation Annual Pass for Fota Wildlife Park
Check out some of our favourite recipes from 2021, including some for people on restricted diets.
Home Illuminations Toolkit
Everyone can participate in the #LightUp4RD Global Chain of Lights!
Show solidarity with the rare disease community and light up or decorate your home with the Rare Disease Day colours at 7pm February 28 .
The Rare Disease Day team at EURORDIS have prepared a really useful video, information and instructions for you.
Schools Lesson Plan
Primary school lesson plan
Share the stories of others living with rare conditions to teach kids about rare conditions and what it is like to live with one. This handy lesson plan includes a familiar story for many children – making friends. The story is translated into multiple languages. The story and lesson may be adapted for other stories.
Suggest to your local primary school to add this lesson plan to the plans for Rare Disease Day (or any time over the coming weeks).
Use on your materials….
Other ways to get involved this Rare Disease Day
- 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 (firstname.lastname@example.org) 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.
- 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.
- 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 (email@example.com) and we will help to spread your message.
- 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!
- Add the official twibbon and Facebook frame to your social media profiles!
- Use the Rare Disease Day logo – print the logo on flyers, t-shirts and even cake – the possibilities are endless!
- 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.
- 300,000 people living in Ireland with a rare disease
- Over 6,000 different rare diseases
- 72% of rare diseases are genetic
- 70% of those genetic rare diseases start in childhood