Rare Disease Day 2024

Here’s our highly anticipated Rare Disease Day 2024 Video!🎥 🌏✨ In an unprecedented effort, individuals worldwide shared their stories in their own words and settings. With over 80 submissions spanning the globe, our video embodies the diverse experiences of the rare disease community. A heartfelt thank you to everyone who shared their story! 🙌 The process of selecting the final clips wasn't easy, but the outcome is nothing short of amazing. 🌟 We hope you all love it as much as we do! Now, it's time for you to join us in spreading the word. 🌍 Share our video, which is available in over 60 languages, across your social media platforms. Let's come together to raise awareness leading up to Rare Disease Day on 29 February 2024. 💙 🚀 Take action today! Click the link in our bio to view the video, and use our official hashtags to inspire others to join the cause. Together, let's make Rare Disease Day 2024 a global movement of compassion and understanding! #RareDiseaseDay #LightUpForRare

The Rare Disease Day 2024 poster is here! 🥳 Join us in the lead up to 29 February by sharing on social media, hanging it up on your wall, or just showing your friends! Available for download on our website here, feel free to translate it into your local languages to spread awareness globally.🗺️ #RareDiseaseDay #LightUpForRare #SpreadAwareness #ShareYourColours Alt Text: A navy blue poster featuring members of the rare disease community above a globe. Text reads “Raise awareness for the 300 million people living with a rare disease and their families worldwide, together with EURORDIS-Rare Diseases Europe and 72 national alliances for rare diseases"

What is Rare Disease Day? Rare Disease Day is a global movement that occurs annually on the last day of February, raising awareness for those living with, supporting, and treating rare diseases. With 600+ events worldwide and participation from 106 countries, Rare Disease Day demonstrates our community's strength and unity. Next year, it falls on 29th February, the rarest day of a leap year!🎆 Globally, there are 300 million people living with one or more of the 6000 rare conditions. These staggering figures underscore the significance of promoting awareness and driving change through Rare Disease Day. 👉 Find out more about Rare Disease Day by clicking the link in our bio . . . #LightUpForRare #ShareYourColours #rarediseases #community #awareness #RaisingAwareness

The rare disease community needs you to raise awareness! 🚨 By sharing your own experiences, you can help shine a light on the 300 million people across the world who are living with a rare disease. 🌍 Whether it’s long or short, every story matters. If you want yours to feature on our website or on our social media, all you need to do is head to our submissions page by following the link in our bio. . . #RareDiseaseDay #ShareYourColours #LightUpForRare #Awareness Alt text: Slide with pictures of people from the rare disease community. Text reads 'Share your story'.

Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! On Wednesday 17 July we are hosting three webinars throughout the day so that, no matter where you are in the world, you can be in the know with what to expect for the 2025 campaign. 🕑 8am CEST 🕑 2pm CEST 🕑 8pm CEST 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), so that you can plan for how you will mark Rare Disease Day 2025! 👉Click the link in our bio to register! . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare Alt Text: Slide with light green background and a webinar graphic. Text reads: "Upcoming Webinar. Sneak peek into Rare Disease Day 2025. Wednesday 17 July. 8am, 2pm, 8pm CEST."

Verena’s son, Pedro, was diagnosed with Malan Syndrome when he was 8 years old. Since his diagnosis, Verena and her husband have been navigating the challenges and uncertainties of life with a rare disease, so that they can provide Pedro with the best support possible. After receiving her son’s diagnosis, Verena reached out to the Malan Syndrome Foundation to learn more about the rare genetic disorder and how she can advocate for Pedro and other families like hers. In 2021, Verena joined their board of directors and has been collaborating with them on behalf of her son and others living with Malan Syndrome to spread awareness and develop support networks for families across the globe. 🌍 Verena believes advocating for social integration and increasing awareness for those living with Malan Syndrome is crucial in providing support for those living with a rare disease and their families. 📖Read Verena’s story and share yours by following the link in our bio. . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare Alt Text: Slide 1: "Verena's Story" "Location: Italy" "Living with: Malan Syndrome" Slide 2: "About Verena" "Verena's son, Pedro, was diagnosed with a rare genetic disorder when he was eight years old. Verena reached out to the Malan Syndrome Foundation after Pedro's diagnosis and has since collaborated with them to advocate for her son." "When you become part of a community of other families like yours, that strong sense of belonging is born." Slide 3: "The position we find ourselves in means that we have to plan for a multitude of possible futures. We had to acquire new and complex skills to become capable of facing changes." Slide 4: "After joining the Board of Directors in 2021, Verena now advocates for increased scientific research and promotes social integration of people living with Malan Syndrome." "Being an advocate is increasing this sense of belonging, increasing knowledge of the disease and improving quality of life."

Our latest school toolkit has been designed in partnership with @rarediseaseuk 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 in our bio! . . #RareDiseaseDay #ShareYourColours #LightUpForRare Alt Text: Photo with young child sitting on grass. Text reads: 'Download our school toolkit designed for children aged 8-12 in collaboration with Genetic Alliance UK'.

At 19 years old, Nataf was diagnosed with Moyamoya disease and found herself having to leave her job to seek treatment. Determined to overcome each challenge Moyamoya presented her with, Nataf travelled to Switzerland where she underwent brain surgery twice in 6 months. Despite a long recovery and further setbacks due to suffering a stroke, Nataf persevered, completing her degree and progressing further in her career. Nataf continues to defy the 10% chance of survival she was originally given by her doctors and now stands proudly as the head of marketing for the firm she works at💪 Although her experience with this rare disease has been fraught with challenges, Nataf continues to conquer the obstacles it brings and strives to be the best version of herself. 📖Read Nataf’s story and share yours by following the link in our bio. . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare Alt Text: Slide 1: "Nataf's Story" "Location Israel" "Living with Moyamoya Disease" Slide 2: "About Nataf" "4 months after starting her career at a law firm, Nataf was diagnosed with Moyamoya Disease." "A month later, through lots of research and determination from her family, Nataf underwent brain surgery in an attempt to treat her illness, followed by another surgery 6 months later." "I was unprepared to settle for anything less than an exceptional future." Slide 3: "Efficiency, greatness and simply being better than yesterday became my guiding principles." Slide 4: "Doctors gave her just a 10% chance of survival, yet Nataf is still conquering her challenges with Moyamoya and continues to progress in her career." "She believes in the ability of the human spirit to triumph over adversity and strives to overcome the obstacles in her journey with Moyamoya," "My journey has been long and I hope it continues in this manner."

From the start of her symptoms in childhood up until her early twenties, Celyna battled many misdiagnoses. As is often the case with rare diseases, many physicians Celyna saw were unable to diagnose her correctly and led her to misdiagnoses ranging from cerebral palsy to psychological illnesses. After DNA testing, Celyna was finally given the correct diagnosis when she was 26 years old. Even with her diagnosis of Hereditary Spastic Paraparesis, Celyna struggled to find ways to manage her symptoms due to a lack of information being available in Brazil. She eventually found the Spastic Paraplegia Foundation and has since been collaborating with them to provide others in Brazil living with HSP and similar disorders with information and emotional support. In 2017 Celyna co-founded ASPEH-Brazil, which later became ASPEC-Brazil, and now serves as their Vice President and Medical-Scientific Board Director, raising awareness for the Rare Disease Community and pushing for more support and funding to seek a cure for Spastic Paraplegia. 📖Read Celyna’s story and share yours by following the link in our bio. . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare Alt Text: Slide 1: "Celyna's Story" "Location Brazil" "Living with Hereditary Spastic Paraplegia" Slide 2: "About Celyna" "Since childhood, Celyna received several misdiagnoses, ranging from psychological illness to cerebral palsy." "At 26 years old, Celyna underwent DNA testing and finally received her diagnosis of Hereditary Spastic Paraparesis subtype SPG4." "It is an honour to raise awareness, provide emotional support, and acquire funding for research." Slide 3: "The Spastic Paraplegia Foundation served as an inspiration to create a group where people with HSP could find information and emotional support." Slide 4: "After little luck finding any information on her disease in Brazil, Celyna eventually found some answers through the Spastic Paraplegia Foundation." "She co-founded ASPEH-Brazil in 2017 - an organisation that provides support for those living with Spastic Paraplegia." "Despite all my difficulties, I did not give up on my dreams."

Tommy, before a happy little boy, faced a sudden decline in December 2021, experiencing a loss of strength in his neck, core and arms. Despite months of deterioration and numerous medical consultations, it wasn't until late April 2022, following a whole exome genetic panel, that Tommy received a diagnosis: Riboflavin Transporter Deficiency (RTD) Type 2, a rare autosomal recessive disorder unfamiliar to his family and doctors. With little information available about RTD's prognosis and treatment options, Tommy's family turned to The Cure RTD Foundation for guidance. Under their direction, Tommy began treatment of high-dose riboflavin alongside intensive physical and occupational therapy. This treatment has allowed Tommy to regain lost skills and demonstrates his resilience and courage in the face of adversity. While riboflavin has been crucial for Tommy, it's important to note that it isn't a cure for RTD. His family remains dedicated to supporting The Cure RTD Foundation in their pursuit of finding a cure, understanding that Tommy's progress isn't guaranteed and that further research and advancements are necessary to improve the lives of those affected by this rare disorder. 👉 Read Tommy’s story here: /heroes/tommys-rtd-journey-as-told-by-his-mom/ 👉 Share your own by clicking the link in our bio. . . #RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare Alt Text: Tommy's Story. 4 Slides with text that can be found by reading his story on our website.

Did you take part in #RareDiseaseDay 2024? We want to hear from you! 📣 We want to know your thoughts on how we can grow the campaign for 2025. What went well? What could be better next year? Help us to improve next year’s Rare Disease Day and continue to raise awareness for the 300 million people across the world living with a rare disease! 👉 Click the link in our bio to complete our short survey before 1 April 2024 . . #Awareness #LightUpForRare #ShareYourColours #community #rarediseases #raredisease Alt text: Slide with dark blue background and a graphic with feedback icons. Text reads: "Help us improve Rare Disease Day. Complete the feedback survey."

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