📝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 28|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 #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 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 #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 #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/