📣 Make your voice heard by taking the new #RareBarometer survey on the impact of rare diseases in daily life. The survey is available in 25 languages and will close on 8 September. 👉 Click here to have your say: https://lnkd.in/g_Di3Dvm . . #RareDiseaseDay #ShareYourColours #Awareness #LightUpForRare
Rare Disease Day
Non-profit Organizations
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity
About us
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
- Website
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https://www.rarediseaseday.org/
External link for Rare Disease Day
- Industry
- Non-profit Organizations
- Company size
- 11-50 employees
- Type
- Nonprofit
Employees at Rare Disease Day
Updates
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We are delighted to announce we have 5 new Rare Disease Day national partners who have recently joined the global movement… 🇧🇬 Rare Diseases Bulgaria 🇪🇨 Federacion Ecuatoriana De Enfermedades Raras O Poco Frecuentes (FERPOF) 🇹🇭 Thai Rare Disease Foundation 🇷🇼 Centre Alliance 🇳🇵 Rare Diseases Society Nepal We are thrilled to be working alongside each of them this year, working towards equitable opportunities and advocating for the 300 million people around the world who are living with a rare disease. Find out more about our new partner organisations and find others in your country by visiting the Rare Disease Day National Partners page on our website: https://lnkd.in/eswzFVnD . . #RareDiseaseDay #ShareYourColours #Awareness #LightUpForRare
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Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! On Wednesday 17 July we will be hosting three webinars throughout the day to cater to different time zones, so no matter where you are in the world, you can stay up to date on what to expect for the 2025 campaign. Learn more about the resources we are revamping and the brand-new downloads we will be producing (with the help of our creative agency and our global partners). We will also be sharing the creative concepts for 2025’s video and poster, so you can start planning how you’d like to use our resources in your national contexts for Rare Disease Day 2025! Click on one of the links below to register for your preferred time! 🕑 8am CEST (UTC+2): https://lnkd.in/g6-qHHFg 🕑 2pm CEST (UTC+2): https://lnkd.in/gRXTUckM 🕑 8pm CEST (UTC+2): https://lnkd.in/gj5gvSHs . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare
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Our latest school toolkit has been designed in partnership with Genetic Alliance UK to help children aged 8-12 imagine what it is like to live with a rare disease and to learn more about Rare Disease Day. 📣Start the conversation on rare diseases with teachers and young people and help educate the future generation on how they can raise awareness for those living with a rare disease. 👉Download the toolkit and a range of other educational materials by clicking the link: https://lnkd.in/ef-TSEUv . . #RareDiseaseDay #ShareYourColours #LightUpForRare #Awareness #Education
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We are looking to partner with a creative agency to develop and produce our visual elements and materials for the 2025-2028 Rare Disease Day International Awareness campaigns. If you want to help us shape the campaigns and raise awareness for the 300 million people around the world living with a rare disease, then we want to hear from you. The deadline for submitting tenders is Friday 3 May 2024. 👉Go to our website to answer our Call for Tenders for the 2025-2028 Rare Disease Day campaigns: Rare Disease Day 2024 👉Download the Call for Tenders document here: https://lnkd.in/edQF7fTi . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare
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Are you part of a company that joined #RareDiseaseDay 2024? We want to hear from you! Help us to improve the campaign for 2025 and understand your needs by sharing your feedback. What did you like? What could be better next year? Fill out our short survey 📝here: https://lnkd.in/esmgVhBd If you took part in #RareDiseaseDay 2024 individually, you can also share your thoughts with us through this other survey here: https://lnkd.in/eDTb3Y8R Together, let’s continue raising awareness and striving for a more equitable society for the 300 million people living with a rare disease! . . #Awareness #LightUpForRare #ShareYourColours #community #rarediseases #raredisease
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The #RareDiseaseDay colours 💙💚💜 shone brightly on 29 February 2024! The community joined the #LightUpForRare initiative by illuminating their: 🏠 homes, 🏛️ landmarks, 🏢 offices, 📱 social media, 🏥 hospitals, ✅ and more! With this Global Chain of Lights ✨ across the world, we advocated for an equitable society for the 300 million people living with a rare disease. Today, we look back at a selection of captured illuminations! . . #Awareness #ShareYourColours #community #rarediseases #raredisease
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You all absolutely dazzled us with your support for Rare! 💫 Your participation in our Global Chain of Lights not only illuminated the world but also spread awareness for the 300 million people living with a rare disease! 🌍 Thank you from the bottom of our hearts for shining your light brightly alongside us. Next week, we'll be dropping a video showcasing some of the most brilliant captured during the campaign! 📹✨ Don’t hesitate to send us your pictures or video at [email protected]. Let's continue to advocate, share our colours, and stand in solidarity for an equitable society for the rare disease community. Together, we can make a difference! 💪 . . #RareDiseaseDay #LightUpForRare #Awareness #ShareYourColours
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🎙️ Listen to our final episode of Rare On Air Stories this year, featuring Leif and his journey with GNE Myopathy. From seeking answers online to receiving a diagnosis in Switzerland, Leif shares his experiences with resilience and adaptation in navigating life with a rare condition. Join Leif as he discusses his treatments and adjustments, shedding light on the importance of perseverance and determination. Despite the challenges, Leif's story serves as a source of inspiration for others facing similar struggles, shown by his meaningful quote - “My brain is my capital, not my body”. Don't miss out on this episode of Rare On Air Stories. Tune in here:https://lnkd.in/g5CHPqvp . . #RareOnAirStories #RareDiseaseDay #ShareYourColours #LightUpForRare
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Have you got your social media pledge cards ready? 📝🌍 Available to download from our website, our pledge cards are written in 8 languages, allowing you to show your passion for Rare Disease Day, in your local contexts! Download them today alongside our other resources by clicking on our website here: https://lnkd.in/efRbDevB. Show your support for the international rare disease community today! 💻💡 . . #RareDiseaseDay #ShareYourColours #Awareness #LightUpForRare
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