Rare Disease Day

Listen to our first episode of Rare on Air Stories today! This episode features Dani who lives with progressive fibrodysplasia ossificans (PFO). You will hear about her journey from the moment she was born to when she was 16 years old and found a lump on her back. Dani explores the problem of misdiagnosis and her journey with FOP. Join Dani as she tells a story of frustration, overwhelming change and finally acceptance. Her story is a symbol of resilience as she shows that no obstacle is impossible to overcome with support and love from each other. You can tune into this episode by clicking the following link: https://lnkd.in/ebk8S6vN

As we launch the #RareDiseaseDay 2025 campaign, we talk of equity for the rare diseases community. But what exactly do we mean by this? How can we achieve it? What part can you play? These are the kinds of questions that our new Equity Toolkit will help to answer. This toolkit is made for anyone looking to educate themselves or others about this global movement and its work in advocating for equity across all sectors for those living with a rare disease. You can find the toolkit through the following link: https://lnkd.in/e-CHhZN7

There is only one day left to register for our #RareDiseaseDay launch webinars…you don’t want to miss it! If you’d like to learn more about how to use our resources and what this campaign means for you, this webinar is the perfect starting point. There will be two sessions to accommodate participants from across the globe. The first session will take place at 9:00 am CET, and the second at 5:00 pm CET on Wednesday, 20 November. These webinars are open to everyone, and you can find the link to register for both sessions here: 9:00am - https://lnkd.in/ecYku5Xn 17:00pm - https://lnkd.in/dnFvaTeH

Ahead of the launch of #RareDiseaseDay 2025 tomorrow, we are excited to announce that our flyers are now available on the website! These flyers can be used to create momentum and engage people in this global movement. They provide information about what rare disease day is, why it is important and ways in which you can get involved. We invite you to share these flyers and watch out for more resources that will be available in the coming days…don’t miss out! The link to our website can be found here: https://lnkd.in/efRbDevB

The launch of Rare Disease Day 2025 is fast approaching and this is your reminder to register for the launch day webinar which will take place on the 20 November at 9AM CET and 5PM CET. This webinar aims to introduce anyone who is looking to raise awareness for Rare Disease Day to our new materials and provides ways to best use them. This is open to everyone and the link to register for both webinars can be found here: 9am - https://lnkd.in/dZ5_YWga 5pm - https://lnkd.in/dnFvaTeH

In just a few days, we are fortunate to be joined by a panel of speakers who will share how equity can be achieved amongst healthcare professionals for those living with a rare disease. We will be joined by Stefan ?ivkovi? from the National Organisation for Rare Diseases of Serbia (NORBS), Prof. dr Goran ?uturilo from the University Children’s Hospital, Belgrade, 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. We look forward to seeing you there and helping you advance your advocacy! The link to register can be found here: https://lnkd.in/e2HDjcrv

Our Rare on Air podcast is making a return for Rare Disease Day 2025! Tune in and help us to share these stories so that we can create a safe space and empower individuals from the rare diseases community to share their experiences and valuable wisdom. This podcast is an opportunity to ensure that the voices of those living with a rare disease are heard so that we can continue to raise awareness, build strength and unity as well as advocate for equity. There will be a new episode every two weeks starting from the day of the launch (20 November) so don’t forget to listen in!

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