The 29 February is all about raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
This vulnerable population requires the help and support of everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy-makers, industry representatives and the general public.
Rare Disease Day is a globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Share your Story
If you are living with a rare disease then sharing your story is a powerful way to support others and get people talking about conditions they have never experienced before. These can be submitted on the Rare Disease Day Website or posted on your personal social media pages or blogs.
In this official video each participant, regardless of their nationality, age, gender, or type of disease –- including rare cancers and undiagnosed conditions –- had the opportunity to share their story.
Events
Across the world, thousands of events will take place in over 100 countries. The Global Chain of Lights event encourages everyone to light or decorate their home with the Rare Disease Day colours at 7 PM local time on 29 February 2024. Creativity is encouraged through the use of colourful decorations, disco lamps and garlands of lights.
There’s also a video you can download to your computer to play from the window which displays all the Rare Disease Day colours in sequence. If you want to go further there are also opportunities to light up a building or monument. This has been a feature of Rare Disease Day for years and sees many famous buildings across the world light up in the colours associated with the campaign.
Education
Getting young people involved at an early age is a brilliant way to educate them on rare diseases and enable them to understand and support people in their school community who may have a rare condition. There’s a great Schools Toolkit you can download and use for free.
Resources
Whether you are an individual, organisation, school or social media master there are resources available for you to help you be a part of something that means so much to so many. This includes the Equity Toolkit.
This is crucial as on Rare Disease Day there’s a call for action for people living with a rare disease to have equal opportunities to realise their full participation in family, work and social life.
So show your solidarity with this special community of people. They deserve respect and understanding for what they face every day of their lives.
Useful Links
Rare Disease Day 2024 - Official Video: https://youtu.be/zEQ828Lkxac?si=VbMWp9jZHUommUdd
Rare Disease Day - Light up for rare instructions: https://download2.rarediseaseday.org/2024/campaign_materials/toolkits/lightupforrare_instructions.pdf
Rare Disease Day - Light Up For Rare Video: https://youtu.be/tfqri6Dnaeg?si=CRgwx-yoEKYvMBxJ
Rare Disease Day — How To Illuminate A Building: https://download2.rarediseaseday.org/2024/campaign_materials/toolkits/how_to_illuminate_RDD_2024_updated.pdf
Rare Disease Day — Share Your Story: https://www.rarediseaseday.org/share-your-story/
Rare Disease Day — Explaining Living With A Rare Disease To Children And Teenagers: https://www.rarediseaseday.org/downloads/school-toolkit-explaining-living-with-a-rare-disease-to-children-and-teenagers/
Rare Disease Day — Downloads Page: https://www.rarediseaseday.org/downloads/
Comments