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Rare Disease Day Official

@rarediseaseday.bsky.social
96 followers 10 following 59 posts

The global awareness raising campaign for people living with rare diseases. 🌍 28 February 2027

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Rare Disease Day Official @rarediseaseday.bsky.social · 01/10/2026
💙 As we count down to #RareDiseaseDay, revisit our Capacity Building video series on enhancing accessibility in physical and digital spaces. Available in 12 languages, it's packed with practical insights to help you build a more inclusive world. 👉 www.rarediseaseday.org/webinars
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Rare Disease Day Official @rarediseaseday.bsky.social · 28/09/2026
💜 #Equity starts with one simple truth: not everyone begins from the same place. Equality gives everyone the same opportunities. Equity removes barriers so everyone can achieve fair outcomes. This #RareDiseaseDay, let's turn awareness into action.
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Rare Disease Day Official @rarediseaseday.bsky.social · 21/09/2026
We achieved #MoreThanYouCanImagine. But we’re still imagining more. 🌍 Millions came together for #RareDiseaseDay 2026 to raise awareness and call for greater equity. Now, we’re building on that momentum for 2027. 🔗 See what we achieved: go.eurordis.org/RDDArticle
A young girl getting her face painted by a woman wearing a pink Rare Disease Day cap against a blue background with event details. With overlapping text: Rare Disease Day 2026: highlights global inequities and amplifies youth voices in call for lasting change.
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Rare Disease Day Official @rarediseaseday.bsky.social · 16/09/2026
🌍 Same goal: bringing #RareDiseaseDay into the classroom. Two different approaches. Stories, games & student research Family conversations, art & an exhibition Our NEW case study shares how schools brought rare disease awareness to life: go.eurordis.org/ItStartsWithAConver…
Children smiling and embracing under text: how schools are bringing rare disease awareness to life: a new case study.
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Rare Disease Day Official @rarediseaseday.bsky.social · 14/09/2026
🎒 What happens when rare diseases become part of the classroom conversation? From Georgia to Portugal, we’ve been exploring how schools are bringing rare disease awareness to life. More soon… 👀 In the meantime, explore our free School Toolkits: go.eurordis.org/SchoolToolkit
Diverse group of children peeking playfully with text about rare diseases in classrooms and school toolkits invitation.
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Rare Disease Day Official @rarediseaseday.bsky.social · 08/09/2026
What is a rare disease? A rare disease is a condition experienced by fewer than 1 in 2,000 people. Yet together, more than 300 million people worldwide are living with a rare disease. Rare diseases are rare. People living with them are not.💙 #RareDiseaseDay
Two children playing barefoot in shallow ocean water under a sky with text asking 'What is a rare disease?' and a bright yellow sun illustration.
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Rare Disease Day Official @rarediseaseday.bsky.social · 13/03/2026
📝Have you completed our #Survey yet? Your opinion helps us to gather insights that shape the future of #RareDiseaseDay and allows us to continue to support the #RareDisease community. Help us make a difference: go.eurordis.org/RDDsurvey
Portait of a boy with overlapping text: have something to say? let us know, Rare Disease Day 2026 survey
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Rare Disease Day Official @rarediseaseday.bsky.social · 06/03/2026
🫵 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: go.rarediseaseday.org/Survey2026
Rare Disease Day Survey! Have your say! Give us YOUR feedback!
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Rare Disease Day Official @rarediseaseday.bsky.social · 04/03/2026
🔇 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: go.rarediseaseday.org/ShortFilm
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Rare Disease Day Official @rarediseaseday.bsky.social · 28/02/2026
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: youtu.be/J5HjbDGMFa0
Raising Youth Voices Short Film, Out Now, @rarediseaseday
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Rare Disease Day Official @rarediseaseday.bsky.social · 28/02/2026
🌍 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: go.rarediseaseday.org/NEWS
“It’s Rare Disease Day!” with the Rare Disease Day hand logo and the website” The background is a blue and purple gradient.
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Rare Disease Day Official @rarediseaseday.bsky.social · 26/02/2026
🎙️ 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: www.eurordis.org/rare-on-air
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 25/02/2026
🌍 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: go.rarediseaseday.org/LIGHTUP #LightUpForRare #RareDiseaseDay #ShareYourColours
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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 24/02/2026
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: go.rarediseaseday.org/YouTube 28|02|2026
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Rare Disease Day Official @rarediseaseday.bsky.social · 21/02/2026
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: go.rarediseaseday.org/article #RareDiseaseDay #PatientAdvocacy
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
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Rare Disease Day Official @rarediseaseday.bsky.social · 19/02/2026
🎙️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: www.eurordis.org/rare-on-air
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 18/02/2026
⏰ 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: go.rarediseaseday.org/RDD Let’s make this year more than you can imagine. 💪 #LightUpForRare #RareDiseaseCommunity
 “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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 17/02/2026
⏰ 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: go.rarediseaseday.org/RDD
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Rare Disease Day Official @rarediseaseday.bsky.social · 15/02/2026
🌍 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: go.rarediseaseday.org/find #RareDiseaseCommunity #GetInvolved
“What’s Occurring... Near You!” A blue and purple gradient background with a world map and several colourful location pins placed across different continents.
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Rare Disease Day Official @rarediseaseday.bsky.social · 13/02/2026
🌟 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: go.rarediseaseday.org/event
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!
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Rare Disease Day Official @rarediseaseday.bsky.social · 12/02/2026
🎙️ 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: www.eurordis.org/rare-on-air
“Rare on Air Stories” in white text over blue, purple, and green painted streaks, with a microphone icon and the text: “Loago, Episode 7.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 09/02/2026
🌍 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 👉 go.rarediseaseday.org/equity #RareDiseaseDay #EquityForRare
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 06/02/2026
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: go.rarediseaseday.org/livestream
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Rare Disease Day Official @rarediseaseday.bsky.social · 06/02/2026
🌟 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: go.rarediseaseday.org/hope
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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 05/02/2026
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: go.rarediseaseday.org/livestream
A wall of colourful post-it notes displaying words that express what equity for people living with rare diseases means to the event attendees.
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Rare Disease Day Official @rarediseaseday.bsky.social · 04/02/2026
🎗️ 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
“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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 02/02/2026
🌍 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: go.rarediseaseday.org/equity #RareDiseaseDay #EquityForRare
“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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 30/01/2026
🌟 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: www.rarediseaseday.org/toolkits
 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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 29/01/2026
🎙️ 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: www.eurordis.org/rare-on-air
“Rare on Air Stories” in white text over blue, purple, and green painted streaks, with a microphone icon and the text: “Léon, Episode 6.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 28/01/2026
⏰ 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: go.rarediseaseday.org/RDD #RareDiseaseCommunity
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 26/01/2026
🧬 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: go.rarediseaseday.org/equity #RareDiseaseDay#TreatmentAccess
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 23/01/2026
🌟 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: go.rarediseaseday.org/friends
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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 22/01/2026
Not attending in person? 🔔 Not to worry, the panel discussion will be livestreamed on YouTube: go.rarediseaseday.org/livestream #RaisingYouthVoices2026 #RareDiseaseDay
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Rare Disease Day Official @rarediseaseday.bsky.social · 19/01/2026
👶 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
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).”
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Rare Disease Day Official @rarediseaseday.bsky.social · 16/01/2026
💡 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: go.rarediseaseday.org/casestudy
“Colorfully lit famous landmarks arranged in a circle against a starry background, with the text ‘#LightUpForRare – A Case Study’ in the center.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 15/01/2026
🎙️ 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: www.eurordis.org/rare-on-air
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 13/01/2026
💜 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. go.rarediseaseday.org/equity #EquityForRare #RareDiseaseCommunity
“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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 08/01/2026
🎙️ 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/
“Rare on Air, Episode 4 featuring Ken and his mother in flowery shirts, with a colorful gradient background and the date 8 January.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 07/01/2026
💜 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: go.rarediseaseday.org/heroes #EquityInDiagnostics #RareDiseaseCommunity
“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.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 05/01/2026
💜 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: go.rarediseaseday.org/equity #RareDiseaseDay #EquityInDiagnostics
“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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 01/01/2026
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: go.rarediseaseday.org/Rachel #RareDiseaseDay
“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!
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Rare Disease Day Official @rarediseaseday.bsky.social · 30/12/2025
💜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
 “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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 25/12/2025
💜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: go.rarediseaseday.org/heroes #RareDiseaseDay #YoungVoices #ShareYourColours
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.
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Rare Disease Day Official @rarediseaseday.bsky.social · 23/12/2025
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
 “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”.
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Rare Disease Day Official @rarediseaseday.bsky.social · 20/12/2025
📣 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: go.rarediseaseday.org/voices #RaisingYouthVoices2026
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Rare Disease Day Official @rarediseaseday.bsky.social · 18/12/2025
🎙️ As #RareDiseaseDay 2026 approaches, #EURORDISRareOnAir Stories continues! 💜 In this episode, we meet Christine, who was diagnosed with #GPA at 24 and turned her 14-year journey through illness and recovery into advocacy and hope. 🎧 Listen now: www.eurordis.org/rare-on-air
“Rare on Air, Episode 3 featuring Christine in a pink and white top, with a colorful gradient background and the date 18 December.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 16/12/2025
🧬 Each rare disease has its own set of challenges, symptoms, and experiences. For many, there are few or no treatment options. 💜Equity means ensuring everyone has the same chance to participate in and benefit from research. Learn More: go.rarediseaseday.org/equity #RareDiseaseDay
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Rare Disease Day Official @rarediseaseday.bsky.social · 11/12/2025
In-person registrations are now open for #RaisingYouthVoiceS2026 in Barcelona! 🎉 Join our Regional Representatives and other young leaders! 👉Register now: go.rarediseaseday.org/voices 🌍 Will also be livestreamed on YouTube. @nordrare.bsky.social @rarediseasesint.bsky.social
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Rare Disease Day Official @rarediseaseday.bsky.social · 09/12/2025
🌍✨ Join the global chain of lights this #RareDiseaseDay! Whether you’re a family lighting up your home or an organisation joining from the office, every light adds to our global chain of lights.🌆🏠 Access our toolkits here: go.rarediseaseday.org/LIGHTUP #LightUpForRare #ShareYourColours
A group of smiling people stand together in a dark room surrounded by glowing neon lights in green, pink, and yellow. The text above reads “How to Light Up for Rare Disease Day.”
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Rare Disease Day Official @rarediseaseday.bsky.social · 05/12/2025
Meet our 6 Regional Reps for Raising Youth Voices 2026! These young leaders are joining us in Barcelona to help shape the future of the rare disease community! Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026 Pablo Ramirez Uribe
Meet our 2026 Raising Youth Voices Regional Representatives, above an arrow and RDI, Rare Disease Day and NORD logos.Stephanie, Yu Su, Maksym, Vincent, Pablo and Liam in colourful circles, smiling. 'Event Registrations Coming Soon...' Ipsen Foundation Logo, 'Realised with the support of Fondation Ipsen, under the aegis of Fondation de France'.
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