Rare Disease Day Official

“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

“Rare on Air, Episode 4 featuring Ken and his mother in flowery shirts, with a colorful gradient background and the date 8 January.”

🎙️ As #RareDiseaseDay 2026 nears, #EURORDISRareOnAir Stories continues!

💜 In this bonus episode, we meet Ken, a full-time caregiver for his mother with #HuntingtonsDisease.

🎧 Listen now:https://www.eurordis.org/rare-on-air/

“The Diagnostic Journey... The Importance of Equity in Reaching a Diagnosis.” Nellie making a heart shape with her hands, Killian in sunglasses and a hat to her right, Monique with pink hair and tattoos. The background is a purple and teal gradient.

“Monique’s Journey – Fabry Disease”. “ I was…showing symptoms when I was 6, but I wasn’t diagnosed until I was 15. Many doubted my suffering. But the pain was real. I was finally diagnosed with Fabry disease... It was a relief.” Monique with pink hair and tattoos smiles softly; purple and blue background with a pink button reading “Read the full story.”

“Nellie’s Journey – Undiagnosed”. “Being undiagnosed affects everything... there’s nothing to write down on forms where it says ‘diagnosis. She has a list of problems...but she loves life...We as a family have accepted...Nellie may never receive a diagnosis” Young girl smiling and forming a heart with her hands; purple background with pink “Read the full story” button.

“Equity in Diagnosis.” “Killian: It took eleven years before I was diagnosed with Episodic Ataxia Type 2 (EA2).” “Shanita: I have myasthenia gravis. I was undiagnosed for almost 14 years.” “Emerald: I was brushed off by numerous male doctors who attributed my abdominal pain to stress.”

💜 For many living with rare diseases, diagnosis takes years, or never comes.
Nellie, Monique and many others shared their unique diagnostic journeys, you can too!

👉 Read more stories here: https://go.rarediseaseday.org/heroes

#EquityInDiagnostics #RareDiseaseCommunity

“Equity in Diagnostics.” A smiling young girl in a bright pink and orange outfit sits in a wheelchair, holding a paintbrush in the air with confidence. The background is purple with soft patterns and paint strokes.

💜 Equity in diagnostics means everyone, no matter their age, gender, race, or circumstances, deserves the same chance at a timely diagnosis.

Awareness is the first step to closing the gaps so learn more here: https://go.rarediseaseday.org/equity

#RareDiseaseDay #EquityInDiagnostics

“Mental Health & Rare Disease. Rachel’s Story! Malta. Classical Ehlers-Danlos Syndrome.” A smiling young woman stands knee-deep in turquoise water with cliffs in the background, representing hope and healing.

A woman with blonde hair wearing a black top stands against a turquoise and purple gradient background, looking confidently at the camera. “After recovering from a 10-year battle with Anorexia and depression... the doctors told me ‘it was my fault’ for what I did to my body over the years. I felt like giving up so many times... I have my own Pilates business. I also run a Mental Health charity, Walk and Talk... And I have written a book about my Mental Illness...Read More!

Mental health and rare disease are deeply connected, but Rachel’s story is a powerful reminder that hope and purpose can grow from even the hardest experiences.

💜 Read it here: https://go.rarediseaseday.org/Rachel

#RareDiseaseDay

“The impact of rare diseases on mental health.” A green awareness ribbon is shown beside the text. A young girl with ribbons in her hair sits quietly at a dinner table with food containers and candles in front of her, appearing thoughtful.

💜Living with a rare disease can impact every corner of a person’s life.

This month we’re raising awareness of mental health in the rare disease community, recognising the importance of open conversations.

Learn more here:https://go.eurordis.org/mentalhealth

#RareDiseaseDay #MentalHealth

Three young people stand smiling against a purple and blue background with text reading “Young Voices! The future generation of the rare disease community.”

“Michael’s Story! Brugada Syndrome. 27 years old. “My family and friends stood like lighthouses…without them, I don’t know what would have happened. I want to help doctors make the right decisions, fast. To save lives. And to reduce mistakes.’ Read the full story!” Greek flag and a portrait of Michael, a young man wearing glasses.

“Anna’s Story! Chronic Recurrent Multifocal Osteomyelitis. 17 years old. “I always felt so alone with my illnesses, and I felt that nobody understood what I was going through. Pain is only temporary, so hold onto hope and...don’t ever give up.” Read the full story!” U.S. flag and a portrait of Anna, a smiling young woman wearing a dark green dress, standing against a purple background.

“Sushmita’s Story! Amelogenesis Imperfecta. 22 years old. “Growing up, the comments cut deeper than the condition itself. I embraced my introverted nature… channeling my energy into what truly mattered.’ Read the full story!” Nepal flag and a portrait of Sushmita, a young woman with long dark curly hair wearing a green lace top, standing against a turquoise and purple gradient background.

💜Meet our young heroes!

They’re sharing their stories to inspire others and shape the future of the rare disease community.

👉 You can read more heroes' stories here: https://go.rarediseaseday.org/heroes

#RareDiseaseDay #YoungVoices #ShareYourColours

“Highlighting Caregivers — Who makes a difference in your life?” A young boy stands in the foreground, while several people in casual clothes hold hands in the background.

Jeanie & Her Husband, “I have the BEST husband. He takes care of me. So now I only take a shower when he is home. "Depression has been my greatest hurdle but my husband is my rock.”

Adel, “My daughter is 12 years old and is suffering from the Dravet syndrome. Being the caregiver of my daughter changed my life forever! It taught me how to be resilient and how to be a better man...

Gideon & Florence, “Gideon started his life with a BANG. He was born unable to breathe and with extremely low blood sugar. He never ceases to smile, laugh, or love his friends and family, but most of all, he looks up to his big sister, Florence”.

This week we’re highlighting the caregivers, families, siblings, and friends who make a difference to the lives of people living with a rare condition every day.

💬 Tag someone you want to thank!
#RareDiseaseDay #Caregivers #RareDiseaseCommunity

📣 The Raising Youth Voices is a panel + networking session discussion designed to ensure that young people are included in the discussions shaping the future of rare disease policy.

👉 Register to attend in Barcelona here: https://go.rarediseaseday.org/voices

#RaisingYouthVoices2026