Rare Disease Day Survey! Have your say! Give us YOUR feedback!
🫵 We want to hear from you!
By completing our #Survey, you’re helping us gather the insights allows us to learn, refine, and build a #RareDiseaseDay campaign that truly supports the #RareDisease community.
Take 10 minutes. Make a difference: https://go.rarediseaseday.org/Survey2026
🔇 Ever felt like you had to stay quiet about your rare disease? You’re not alone.
In Barcelona, young advocates shared their experiences of stigma, finding their voice & breaking isolation.
🎥 Watch the Raising Youth Voices short film: https://go.rarediseaseday.org/ShortFilm
Raising Youth Voices Short Film, Out Now, @rarediseaseday
Presented by Fondation Ipsen Studio, the #RaisingYouthVoices2026 short film featuring never-before-seen content from our Regional Representatives is now live on our YouTube channel!
🎬 Watch it the full film: https://youtu.be/J5HjbDGMFa0
“It’s Rare Disease Day!” with the Rare Disease Day hand logo and the website” The background is a blue and purple gradient.
🌍 It’s #RareDiseaseDay 2026! 💜
Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.
👉 Read more: https://go.rarediseaseday.org/NEWS
“Rare on Air Stories” in white text over blue, purple, and green painted streaks, with a microphone icon behind Stephanie in a while shirt, and the text: “Stephanie, Episode 9.”
🎙️ In Rare Disease Day week, #EURORDISRareOnAir shares its final episode, Stephanie’s story.
Her daughter’s fight with #LIG4 syndrome shows a mother’s love, courage, and hope through misdiagnoses, travel, and the search for a cure. 💜
🎧 Listen now: https://www.eurordis.org/rare-on-air/
A smiling young boy wearing glasses holds a bundle of glowing blue fairy lights in his hands, surrounded by soft light in a dark room.
🌍 The world is lighting up for Rare Disease Day! ✨
Visit a monument near you or light up your home to join the global chain of lights.
👉 Use our toolkits & event map to get started: https://go.rarediseaseday.org/LIGHTUP
#LightUpForRare #RareDiseaseDay #ShareYourColours
It’s not easy to describe our first ever in-person event in ONE word, but we can try!
🎬 The #RaisingYouthVoices2026 short film drops this #RareDiseaseDay.
👉 Subscribe to our YouTube to be the first to watch: https://go.rarediseaseday.org/YouTube
28|02|2026
Raising Youth Voices 2026, Shaping the future of the rare disease community.
Read the full article, www.rarediseaseday.org.
“There’s a stigma around sharing your rare disease, and people are scared to be judged — the internet can be a cruel place.” Liam
“Youth is the hope. If young people learn about rare diseases early, they can change how society treats people like us.” Su
What happens when young rare disease advocates from across the world are given the space to speak, connect and lead?
👉 Read the #RaisingYouthVoices2026 article here: https://go.rarediseaseday.org/article
#RareDiseaseDay #PatientAdvocacy
“Rare on Air Stories” in white text over blue, purple, and green painted streaks, Ren smiles at the camera from a pier in Australia, “Ren, Episode 8.”
🎙️The final countdown to #RareDiseaseDay is on and we’re back with our 8th episode of Rare on Air Stories! 💜
Meet Ren who lives with #CongenitalPanhypopituitarism, a story of resilience and hope in the face of lifelong hormone challenges.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
“Days until Rare Disease Day: 10.” The number “10” is large and white with yellow spark lines around it. The background is a blue and purple gradient, with the Rare Disease Day logo at the bottom and the hashtag “#RareDiseaseDay.”
⏰ Only 10 days to go until #RareDiseaseDay!
Get ready to light up, share your colours, and make the rare visible.
Discover events, toolkits & ways to get involved: https://go.rarediseaseday.org/RDD
Let’s make this year more than you can imagine. 💪
#LightUpForRare #RareDiseaseCommunity
⏰ Here’s what some of our #RaisingYouthVoices2026 Regions Reps are planning for #RareDiseaseDay! With 11 days to go, find out how you can #GetInvolved in the campaign.
🔗 Learn more: https://go.rarediseaseday.org/RDD
“What’s Occurring... Near You!” A blue and purple gradient background with a world map and several colourful location pins placed across different continents.
🌍 What’s happening for #RareDiseaseDay near you?
Fun runs, conferences & more, our community is celebrating across the world!
👉 It’s not too late to add your event to the map or find one nearby: https://go.rarediseaseday.org/find
#RareDiseaseCommunity #GetInvolved
Hi! I’m Mak and I live with Ectodermal Dysplasia
I love to raise awareness about inclusion with humour! I spoke at TEDX and wrote a book about m experience as an employee with an invisible disability.
I deal everyday with social exclusion and harassment in school, to discrimination while looking for employment, to the unkind gaze and judgement of others in public spaces to this day.
For me, equity means more opportunities than you can imagine!
🌟 Meet Mak.
Equity for her means more opportunities to thrive in your community, beyond the discrimination you face.
👉 Provide opportunities in YOUR community this #RareDiseaseDay by planning an event: https://go.rarediseaseday.org/event
“Rare on Air Stories” in white text over blue, purple, and green painted streaks, with a microphone icon and the text: “Loago, Episode 7.”
🎙️ In our seventh episode of Rare on Air Stories, we meet Loago from Botswana, who lives with Gaucher disease.
Diagnosed as a teenager, his story is one of resilience, loss, and hope in the face of unequal access to care.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
“Blue-to-purple gradient graphic for Rare Disease Day. White text reads ‘Rare diseases currently affect 5% of the worldwide population’. The Rare Disease Day logo appears at the top left, with the date ‘Feb 28 2026’ at the top right. Bottom text includes ‘rarediseaseday.org’, ‘#RareDiseaseDay’, and a 2019 European Journal of Human Genetics reference.”
🌍 Rare diseases affect over 300 million people, yet access to diagnosis & treatment still depends on where you live.
💜 Equity for rare diseases means is access to suitable care, regardless of where you live.
Learn more 👉 https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
During the #RaisingYouthVoices2026 networking session we asked people to share a word that completes the #RareDiseaseDay campaign slogan from their perspective: 'More … than you can imagine'.
▶️ Catch-up now: https://go.rarediseaseday.org/livestream
Hi! I'm Lignes Warry Apparao and I live with Nemalin Rod Mypothy.
I love to create social media content which inspires others and creates an online community of kind and genuine souls.
I deal everyday with…equal opportunities in employment ad fair compensation are a particularly large issue: I’m often offered lower salaries because of bias tied to my conditions.
For me, equity means more hope than you can imagine.
🌟 Meet Linges
She shared with us that, for her, equity is about having hope even in the face of adversity. Highlighting hope give us resilience when advocating for equity.
👉 Spread hope this #RareDiseaseDay by sharing your story: https://go.rarediseaseday.org/hope
A wall of colourful post-it notes displaying words that express what equity for people living with rare diseases means to the event attendees.
Yesterday in Barcelona, we hosted our first-ever global event, Raising Youth Voices. 🌍
Six Regional Reps shared lived experiences on isolation, advocacy, and building inclusive, sustainable systems across diverse regions.
Watch now: https://go.rarediseaseday.org/livestream
“The 5-year survival rate is lower for rare cancer patients compared to those with common cancers. Feb 28, 2026. #RareDiseaseDay.” A blue and purple gradient background with bold white text. The Rare Disease Day logo (multicoloured hand) appears in the top left.
🎗️ Rare cancers often receive less attention, leaving patients and families with fewer options and more uncertainty. Equal funding isn’t enough.
💜 Equity for rare diseases means fair funding, equal care & real hope for all.
#RareDiseaseDay #EquityForRare #RareCancers #WorldCancerDay
“300 million people worldwide living with a rare disease. 28 Feb 2026. #RareDiseaseDay.” A smooth blue-purple gradient background with bold white text and the Rare Disease Day logo (a multicoloured hand) at the top left.
🌍 While 300 million people worldwide live with a rare disease, funding is limited.
💜 Equity for rare diseases means investing more where it’s needed most.
Learn more about equity: https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
Hi! We’re Ayca and Burak Can Sahin and we live with Spinal Muscular Atrophy.
We love to… Ayca is a PhD candidate in neuroscience conducting research on her very own disease. Burak holds a BSC in computor engineering with a minor in international relations.
I deal everyday with many public spaces, transportation system, and building are still not fully accessible for people with mobility impairment.
For us, equity means more breakthroughs than you can imagine.
🌟 Meet siblings Ayca and Burak, who both live with SMA and have achieved breakthroughs at different levels. For them, equity means breaking down barriers through greater understanding of rare diseases.
👉 Learn more this #RareDiseaseDay: https://www.rarediseaseday.org/toolkits/
“Rare on Air Stories” in white text over blue, purple, and green painted streaks, with a microphone icon and the text: “Léon, Episode 6.”
🎙️ The countdown to #RareDiseaseDay continues — and #RareOnAir Stories is back!
💜 In this episode, we meet Hong-Ahh, whose son Léon lives with #LAMA2 congenital muscular dystrophy — a story of parental love and hope against the odds.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
“Days until Rare Disease Day: 30.” The number “30” is large and white with yellow spark lines around it. The background is a gradient of blue and purple with the Rare Disease Day logo at the bottom and the hashtag “#RareDiseaseDay.”
⏰ The countdown continues…ONE MONTH until #RareDiseaseDay!
How are you going to #LightUpForRare of #ShareYourColours? We want to know!
🌍 Explore toolkits & events to get involved: https://go.rarediseaseday.org/RDD
#RareDiseaseCommunity
“Blue-to-purple gradient graphic for Rare Disease Day. White text reads ‘72% of rare diseases are genetic’. Smaller text notes other causes include infections, allergies, environmental factors, or rare cancers. The date ‘28 Feb 2026’, the Rare Disease Day logo, ‘rarediseaseday.org’, ‘#RareDiseaseDay’, and a 2019 European Journal of Human Genetics reference appear on the image.”
🧬 People living with a rare disease often wait years for answers.
💜 Equity means every person deserves the same chance to benefit from a treatment for their condition.
👉 Learn more: https://go.rarediseaseday.org/equity
#RareDiseaseDay#TreatmentAccess
Hi! I'm Micah Clayborne and I live with Danon's Disease.
I love to play video games, especially sports related ones. I also enjoy going to sporting events and travelling.
I deal everyday with an educational system that is not really set up to deal with people with different abilities.
For me, Equity means more community than you can imagine.
🌟 Meet Micah, one of our 2026 heroes and an advocate for more community than you can imagine for those living with a rare disease.
👉 Find YOUR community this #RareDiseaseDay: https://go.rarediseaseday.org/friends
Not attending in person?
🔔 Not to worry, the panel discussion will be livestreamed on YouTube: https://go.rarediseaseday.org/livestream
#RaisingYouthVoices2026 #RareDiseaseDay
Rare Disease Day logo, ‘28 FEB 2026’. In the centre, ‘70% OF GENETIC RARE DISEASES’, followed by ‘START IN’ ‘CHILDHOOD’. ‘rarediseaseday.org’. ‘#RareDiseaseDay’. Along the bottom is the citation: ‘Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database’, European Journal of Human Genetics (2019).”
👶 For children with genetic rare diseases, the rare disease journey often starts early.
💜 Equity for rare diseases means giving every child, everywhere, an equal start in life.
👉 Learn more:https://go.rarediseaseday.org/equity
#RareDiseaseDay #EquityForRare
“Colorfully lit famous landmarks arranged in a circle against a starry background, with the text ‘#LightUpForRare – A Case Study’ in the center.”
💡 How does #LightUpForRare work in practice?
Our new #casestudy explores how organisations in Northern Ireland, Ukraine & Ghana brought the initiative to life, demonstrating how a global initiative can be used to drive by local action.
🔗 Read now: https://go.rarediseaseday.org/casestudy
“Rare on Air, Episode 5 featuring Jessa in a brown cardigan, with a colourful purple and blue painted gradient background and the date 15 January.”
🎙️ As #RareDiseaseDay 2026 nears, #RareOnAir Stories continues!
💜 In this episode, we meet Jessa, an 18-year-old living with #EDS, #MCTD & juvenile arthritis, proving resilience and hope can redefine what’s possible.
🎧 Listen now: https://www.eurordis.org/rare-on-air/
“Equity means fair access to diagnosis, treatment, care and opportunities. Rare Disease Day – Feb 28, 2026.” The Rare Disease Day logo (a multicoloured hand) appears in the upper left corner. The background is a smooth blue and purple gradient.
Equality, three people with different heights are stood on the same size box and can see the football game at various quality.
Equity, all three people have different size boxes to stand on giving them an equal viewpoint to watch the football game.
💜 For people living with a rare disease, equity means recognising unique needs & breaking down barriers — so everyone can fully participate in life, education & work.
⚖️ Equity ≠ equality. It’s fairness in action.
https://go.rarediseaseday.org/equity
#EquityForRare #RareDiseaseCommunity
