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Having a #RareCondition isn't that #rare! 3.5 million in the UK are affected by a rare condition, that's #1in17 of us. RT if you're part of the #RareCommunity. #RareDiseaseDay2022 #RareDiseaseDay #RareDisease

Welcome to #RareDiseaseDay, Europe! 🎉 There are over 300 million people who live with a rare disease in Europe. With events taking place all over the continent, there's plenty to get involved in today! How are you getting involved in #RareDiseaseDay in Europe?👇👇👇

TODAY is #RareDiseaseDay! 💙💚💜 All over the world, the rare disease community are sharing their colours and demanding equity for people living with a rare disease. As a global community, we have a powerful voice! 📣 How are you sharing your colours today? 👇👇👇

Did you know? Rare Diseases currently affect 5% of the worldwide population. Rare Disease Day Rare Disease UK #RareDiseaseDay

It's 7 PM in GMT standard time! That means it's Ireland and the United-Kingdom's turn to display their brightest #RareDiseaseDay 💙💚💜 colours! Join the movement and #LightUpForRare in your homes! Find out how here 👉 cutt.ly/zPlxnHb

New post: Marathon Man Raises £1134 cystinosis.org.uk/news/marathon-…

This means #Procysbi will now become routinely available in the NHS across Wales to treat this condition. We took part in the appraisal last year in partnership with the CystinosisUK and we're both so happy to achieve this result!

New post: Procysbi Available in Wales cystinosis.org.uk/news/procysbi-…

New post: History of Cystinosis – UK Disability History Month cystinosis.org.uk/news/history-o…

New post: Gene Therapy Trials Update cystinosis.org.uk/news/gene-ther…

New post: Spring 2022 Newsletter cystinosis.org.uk/newsletters/sp…

New post: Summer 2022 Newsletter cystinosis.org.uk/newsletters/su…

Summer 2022 Newsletter cystinosis.org.uk/newsletters/su…

Spring 2022 Newsletter cystinosis.org.uk/newsletters/sp…

New post: Winter 2022 Newsletter cystinosis.org.uk/newsletters/wi…

New post: Contact: For Families With Disabled Children cystinosis.org.uk/news/contact-f…

Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29 February - Rare Disease Day! eventbrite.co.uk/e/cystinosis-c…

Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 International Conference is open for registrations! You can find out more on our dedicated webpage: cystinosis-europe.eu/our-conference

This evening, #cystinosis families from around the world were welcomed to the 2024 CNE Conference by event Chairperson Will Newman #BetterTogether CystinosisUK Cystinosis Ireland

Have experience with cystagon (mercaptamine) or procysbi (cysteamine bitartrate)? Share your insights through our questionnaire to help us understand the impact of cystinosis treatment on daily life. 👉 Visit tinyurl.com/CystinosisTrea… to participate. #Cystinosis #IMD #Study