Rare Disease Day

As you know, we launched our #RareDiseaseDay 2025 resources a few weeks ago. These materials included social media templates such as banners, pledge cards, infographics, posters and virtual backgrounds which are available in a number of languages. But that’s not all! Some of these materials are editable, meaning that they can be changed to adapt your personal, local, regional or national context. If you haven’t already, head to our website using the following link to explore ways that you can raise awareness for the rare diseases community: https://lnkd.in/efRbDevB We look forward to seeing how you use these to advocate for those living with rare diseases!

Calling all companies looking to advance their advocacy for the rare disease community! We are holding a webinar on Tuesday 12 November at 3PM (CET, UT+2) to introduce companies in the healthcare industry to our upcoming campaign resources. It will be a 90-minute webinar that provides to those looking to recognise the needs of the rare disease community and improve the support and care offered to them, an insight into how best to engage with the campaign. We encourage you to invite colleagues who would benefit from a better understanding of the campaign as Rare Disease Day 2025 approaches. If you are interested in our introductory webinar, please register through the following link: https://lnkd.in/eQmsQJsm We look forward to seeing you there.

Last month, accessibility experts Adéla Odrihocká, André Felix, and James Buller shared insights on enhancing accessibility and inclusivity. We explored how to improve online resources, social media, websites, and both in-person and online events, as well as the broader importance of accessibility for the rare disease community and beyond. Some best practices discussed include using simple language and avoiding acronyms, capitalising hashtags for readability, adding alt text or image descriptions to visuals, including descriptive calls to action, and ensuring that visuals have dark underlayers with clear text. For events, recommendations were made to provide live captioning, offer sign language interpretation, ensure venues are accessible, and share event materials in advance in accessible formats. To learn more, watch the full webinar through the link below, and make sure to share your insights in the comments! https://lnkd.in/eRCZpRhG #RareDiseaseDay

As we gear up for the launch of the #RareDiseaseDay 2025 campaign, it’s a great time to reflect on what Rare Disease Day is and why it matters. This global movement aims to increase understanding of the lives of people living with rare diseases, alongside their families, friends, and caregivers. Each year, events take place around the world, with an incredible 106 countries showing solidarity with the rare disease community. With 300 million people living with one or many of over 6,000 rare conditions, raising awareness and fighting for change is crucial. That’s the core mission of Rare Disease Day. Falling on the last day of February every year, Rare Disease Day 2025 will be marked on 28th February. #RareDiseaseDay2025 #awareness #change

After kickstarting the #RareDiseaseDay 2025 campaign with a webinar on accessibility, we hope to see you on 13 November 2024 at 2 pm (CET) for our next webinar focused on raising awareness among healthcare providers about rare diseases. We will be joined by our experts, Stefan Živković from the National Organisation for Rare Diseases of Serbia (NORBS), Yukiko Nishimura from the Advocacy Service for Rare and Intractable Diseases' multi-stakeholders in Japan (ASrid), Nadiah Hanim Abdul Latif from the Malaysian Rare Disorders Society, and Natalia Samonenko from the Orphan Disease Center of the National Children's Specialised Hospital “Ohmatdyt” in Ukraine. Register and make the most of this opportunity to engage healthcare professionals and call for effective strategies to improve diagnosis, care and support for those living with rare diseases. To register, use the following link: https://lnkd.in/e9N5ZBwV

As we approach the launch of the #RareDiseaseDay campaign, we're excited to share that our 2025 resources are now live on our website! You’ll find pledge cards, flyers, social media templates, and many more materials available in various languages. We encourage you to use these resources to raise awareness of Rare Disease Day, recognise the experiences of the rare disease community, and advocate for equity. By engaging people around the world, we can ensure the needs of those living with rare diseases are met. Visit our website to explore these new resources – we can't wait to see how you use them in the coming months! You can find them using the following link: https://lnkd.in/efRbDevB

The future is accessibility! In the build-up to #RareDiseaseDay 2025, we look forward to inviting you to our webinar where we will be joined by speakers Adéla Odrihocká, André Felix and James Buller to explore how accessibility within the rare disease community can be improved. If you are interested in a more inclusive world that welcomes those with rare diseases with open arms, this webinar is for you. Don’t forget to register using the link below: https://shorturl.at/rRNnt We look forward to seeing you on the 18 September at 2 pm (CEST or UT+2)!

📣 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

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

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