Our #RareDiseaseDay campaign page is now live! Explore: 📷 Open and honest podcasts from the community 📷 Powerful images and quotes 📷 Newly published reports Thank you to everyone who shared their lived experiences and insights so openly with us. Please listen, share and help amplify these voices. @GeneticAll_UK @eurordis @RareRevolutionM @RDRUKHub @RareDiseases @CiliaAlliance @raredisorders @camraredisease @bbs__uk @SickleCellUK @rarediseaseday breaking-down-barriers.org.u…

Today is Children in Need Day! @BBCCiN Celebrating the incredible impact Children in Need has on young people across the UK. We’ve seen first-hand how their support helps organisations like ours bring joy, confidence, and fun activities to the children and young people who need them most. With only 1 in 6 projects able to receive funding, every donation truly makes a difference — and we understand this all too well. Tune into tonight’s Children in Need shows to see the inspiring stories, the brilliant entertainment, and the real impact your generosity has on young lives. #ChildrenInNeed #TogetherWeMakeADifference bbcchildreninneed.co.uk/

#Flu is spreading earlier than usual. There are 2.4 million flu #vaccine available appointments next week. Duncan Burton, Chief Nursing Officer for England, said: “This early rise of flu in children is particularly concerning – especially given that flu circulation in children normally precedes that in adults – so it’s vitally important those eligible come forward for their vaccine as soon as possible to avoid a long and drawn-out flu season. @NHSuk @NHSEngland Check if you are Eligible and Book Now ➡️ nhs.uk/fluvaccine@NHSuk

Calling All Researchers! There is still time to apply for the Early Career Researcher Award in PPIE 2025. Recognising the efforts of early #researchers in adopting effective and #inclusive #PPIE approaches in #RareDisease in the UK. Apply by 16th November 2025 @RDRUKHub @NIHRresearch @GeneticAll_UK Find out more: rd-research.org.uk/uncategor…

We are at the @camraredisease #RareSummit25 today... Pop along to our stand and discover your family features with the Tree of Life activity.

Planning for the future - is often a topic, we leave for another day, but it is important to think about for you and your family. The charity, @contactfamilies have partnered with Renaissance Legal to offer webinars about planning for the future. In case you missed their recent webinar, you can watch this, alongside finding further information from @contactfamilies about planning for your future, and more topics and useful resources around preparing for adulthood on our website: alstrom.org.uk/planning-for-…

We are very excited to be attending the #RARESummit25 Tomorrow! Alongside @OpenUniversity @GRACE_projectUK to explore how our lived experiences shape our lives and our healthcare at the @camraredisease RARE Summit 2025 event. Come along to our exhibition stand and find our Tree of Traits activity, where you can explore your family features! @GeneticAll_UK @RareDiseases @RareBeacon @GenePeopleUK @RareRevolutionM @healx @lifearc1 Find our more about RARE Summit 2025 camraredisease.org/raresummi…

Did you know that it is #StressAwarenessWeek On the @AS_UK #Wellbeing Hub you will find an array of resources, including helpful top tips to manage stress, including meditation and breathing techniques to try with short films to guide you, so you can practice in the comfort of your own home. alstrom.org.uk/wellbeing-ser…

Exciting opportunity to have your voice heard and help shape the future of Rare Disease Care in England. We are inviting people living with rare conditions and/or their carers to take part in interviews and focus groups for the RareCare project. This research is part of an independent evaluation of England’s Rare Disease Framework and Action Plans. What’s involved? • A 60–90-minute interview. • Flexible timing, arranged around your availability. • Online via Microsoft Teams (support provided if needed). • You will receive a £25 payment from Alström Syndrome as a thank you for your time. You can also have your views heard in a separate short survey. Further information can be found on the ASUK website. @GeneticAll_UK @RareRevolutionM @RareDiseases @camraredisease @RareBeacon @eurordis @contactfamilies @consiliumsci alstrom.org.uk/rarecare-proj…

We are delighted to be attending the RareQol EDIRA event to COCO and celebrate the 'Doers'. Date: 7th November 2025 Hybrid Event: Online and In-person This is an uplifting event from the Equality, Diversity and Inclusive Research Association (EDIRA). Find out more on the website rareqol.com/edira-25/

On the 6th November, we will be attending and exhibiting at the @camraredisease #RareSummit25 Working together to build more inclusive, accessible, and equitable genetics healthcare and research for all. Come along to our exhibition stand and find our Tree of Traits where you can explore your family features! Find our more about RARESummit 2025 camraredisease.org/raresummi…

Help your body fight flu. Stay strong. Get #vaccinated. People with long-term health conditions are being encouraged to get their #flu vaccination this #winter. Those eligible can book to receive their flu jab on the NHS website, through the NHS App or by calling 119. @DHSCgovuk Book Your Flu Jab Today: nhs.uk/.../vaccination.../bo…

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_uk website for more info: sibs.org.uk/nsd

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 you seem, and smarter than you think.

From the 1st April many everyday services are increasing... The @MoneySavingExp 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 look. @sensecharity @RNIB @contactfamilies @guidedogs moneysavingexpert.com/

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 day or night on telephone number 116 123

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 @BBCNews Eid Celebrations around the world in pictures. bbc.co.uk/news/articles/c75d…

Exciting news!!

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.or…

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