📝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

🫵 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

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 #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

🎙️ 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/

🌍 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#RaisingYouthVoices2026#RareDiseaseDay28|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: https://go.rarediseaseday.org/article#RaisingYouthVoices2026 #RareDiseaseDay #PatientAdvocacy

🎙️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/

⏰ 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#RareDiseaseDay 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 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#RareDiseaseDay #RareDiseaseCommunity #GetInvolved

🌟 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

🎙️ 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/

🌍 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

🌟 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

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

🎗️ 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

🌍 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

🌟 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/

🎙️ 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/

⏰ 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#RareDiseaseDay#LightUpForRare#ShareYourColours?#RareDiseaseCommunity

🧬 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

🌟 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

👶 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

💡 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

🎙️ 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/

💜 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

🎙️ 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/

💜 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 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 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

💜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

💜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

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

🎙️ 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: https://www.eurordis.org/rare-on-air/

🧬 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: https://go.rarediseaseday.org/equity #RareDiseaseDay

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

🌍✨ 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: https://go.rarediseaseday.org/LIGHTUP#RareDiseaseDay#LightUpForRare #ShareYourColours

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

🎙️ The countdown to #RareDiseaseDay continues, and #EURORDISRareOnAir Stories is back! 💜 In this episode, we meet Annarita who lives with #CharcotMarieTooth disease type 2Z, and discover how dance helped her rediscover strength and joy. 🎧 Listen now: https://www.eurordis.org/rare-on-air/

🌍💡 The global chain of lights keeps growing! Join #LightUpForRare by lighting up your building or landmark — use our Illuminations Toolkit to get started: https://go.rarediseaseday.org/LIGHTUP#LightUpForRare 💬 Already joined? Comment & tell us where you saw lights last year! #RareDiseaseDay #ShareYourColours

💜It’s inspiring to see what collaboration can achieve! Events like this strengthen the rare disease community and remind us how powerful we are together. 📍Share YOUR event & find others near you: https://go.rarediseaseday.org/event #RareDiseaseDay2026 #RareDiseaseCommunity

✨Nicole’s story shows that you can change the narrative and take control, no matter the challenges you face. Born with Primary Lymphedema–WILD Syndrome, she’s raising awareness and empowering others through fashion! 📣Share your story: https://go.rarediseaseday.org/share #RareDiseaseDay

🎙️ 100 days to #RareDiseaseDay! 💜 #EURORDISRareOnAir Stories return with Ahmed, who reflects on his global career and how living with #PCD has deepened his strength and purpose. 🎧 Listen to his inspiring story: https://www.eurordis.org/rare-on-air/

The 100-day countdown to #RareDiseaseDay begins! Meet Mak, Linges, Micah, Ayça & Burak, our heroes showing what life is like for the 300M people living with a rare disease. Full video 🎥 youtu.be/7J1oTfoIOGw Let’s bring about equity in more ways than even we can imagine! #ShareYourColours