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Share your story - for #RareDiseaseDay Rare Disease Day It is simple to share your experiences and raise awareness on the Rare Disease Day website Follow the link below to find out more... rarediseaseday.org/share-your-sto…

This week is #ChildrensMentalHealthWeek #CMHW2025 Did you know 1 in 5 children face mental health challenges? Place2Be have an array of useful resources on their website including activities for schools. childrensmentalhealthweek.org.uk/resources/

We have some exciting news... On Rare Disease Day we will be launching the ASUK Community 'Off the Record' podcast! Where you will be able to hear about the services and support available alongside getting to know more about the ASUK team, clinicians and researchers, what secrets

Did you know that today is #InternationalCochlearImplantDay? Find out more about cochlear implants, how they work and hear from those with lived experience on the RNID website: rnid.org.uk/information-an…

Tomorrow is Rare Disease Day What can I do to help the #AlstromSyndrome Community? Complete the AS Global Patient Registry so we are research ready: alstrom.org.uk/patient-regist… Listen to the AS Community 'Off the Record' podcast - it goes live tomorrow! #RareDiseaseDay

Did you know - today is #YoungCarersActionDay 2025 Give me a break! Check out the Carers Trust website to hear from young carers about why they need a break and how we can help. Carers UK Chill4us Carers Care for the Carers carers.org/young-carers-a…

Applications Now Open: Join the Lived Experience Advisory Panel (LEAP) Help shape the future of rare disease research, clinical trials, and patient engagement by sharing your insights and expertise. Join the webinar on the 28th March 12pm-1pm GMT where you'll hear an overview

We know many of you will be worried about proposed #WelfareCuts We will be supporting our community through any changes. Complete the Sense form it automatically sends your MP an email. This lets them know your thoughts on the proposed disability #BenefitsCuts. Ensure

Let's have some positive news for a change! Exciting #AlstromSyndrome Research developments to share with you all... pop along to the ASUK website to check them out... We are also opening up the AS Global Database - let's get research ready and connect families!

Let's get research ready and connect communities together. It will help researchers know the numbers of those diagnosed. If you live outside the UK and have a confirmed diagnosis of AS, then complete the AS global contact form, it's quick and easy! forms.gle/mK4EJvKa1KcPva…

Wishing everyone celebrating in the UK and around the world, a blessed #EidMubarak May this special time bring joy, peace, and happiness to you and your loved ones. Check out the BBC News (UK) Eid Celebrations around the world in pictures. bbc.co.uk/news/articles/…

We hope all you lovely mums out there had a wonderful Mothering Sunday yesterday... but we know for some people the day may bring mixed emotions, whether you are finding it tough, feeling alone, dealing with grief or wanting to talk Samaritans are there for you any time of the

From the 1st April many everyday services are increasing... The MoneySavingExpert website has some great tips and news on ways to save money, including how to save energy, haggle on your Broadband, TV subscriptions or how to get the cheapest insurance. It is definitely worth a

This sounds amazing!! Happy Easter to you all 🥳🐰🐰

Feel Good Friday Sometimes we just need a little reminder how strong and resilient we are. Sometimes we don't reflect enough on those small little steps we make every day, that make a difference. The picture reads Always remember... you are braver than you believe, stronger than

Today is a special day... #NationalSiblingsDay2025 #ItsASiblingThing Siblings play such a special role in the lives of their brothers and sisters who are diagnosed with a rare condition, that they deserve a day that recognises how special they are. Check out the charity Sibs

Check out the 33 places where children can eat free or for £1 over the #Easter holidays... I've also heard Morrisons are doing free breakfasts for families during the Easter break too! bigissue.com/life/food/all-…

Just in case you missed the AS Community 'Off the Record' Podcast Hear a few things you didn't know about us!! Alström Angels Alström Syndrom Germany Alstrom Syndrome Int Rare Disease Day RNIB Deafblind UK Genetic Alliance UK RARE Revolution Magazine Beacon for Rare Diseases Cambridge Rare Disease Network (CamRARE) alstrom.org.uk/podcast/

We are delighted to be attending the NHS NHS ConfedExpo Conference in Manchester. Kerry Leeson-Beevers has today been presenting - Individually rare, Collectively common: Your role in closing the health inequality gap #nhsconfedexpo

Excellent session run by Amicus Therapeutics at the NHS ConfedExpo, we were delighted to be involved Kerry Leeson-Beevers Individually #rare collectively common, your role in closing the health #inequality gap. #nhsconfedexpo