Alström Syndrome UK

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

@VICTAUK Parent Workshop – Early Intervention Sleep Support-Building Strong Foundations. VICTA UK are providing an online session for parents of children aged 0-4 about the importance of helping their children to develop healthy sleep habits. Pop along to the website to find out more and book your place. @sensecharity @RNIB @DeafblindUK @bbs__uk @guidedogs victaparents.org.uk/our-events/ear…

#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. @NHSEngland @NHSuk Check if you are Eligible and Book Now ➡️ @NHSuk" target="_blank" rel="nofollow noopener">nhs.uk/fluvaccine@NHS…

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/uncategorized/…

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-t…

We are very excited to be attending the #RARESummit25 Tomorrow! Our @BarriersDown Network and The @OpenUniversity @GRACE_projectUK will be collaborating 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/raresummit25-l…

At this time of year, many of you will have had information about getting your #flu #vaccination, but you may be wondering why you haven’t been called for your #Covid-19 #Autumn #booster. Our #AlstromSyndrome Clinical Experts in the UK, Dr Tarek Hiwot and Dr. Shyam Madathil have given us a statement to share with you, which we hope will alleviate some of your concerns. alstrom.org.uk/covid-vaccine-…

Did you know that it is #StressAwarenessWeek In our #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-serv…

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-proje…

Join us for a special Festive Wellbeing Webinar on Thursday 27th November 2025 from 7:00 - 8:00 pm (UK, GMT) Unwrapping Calm: Coping with Burnout and Overload during the Festive Season. The holidays are coming — and with them, the juggling act begins. Between the planning, decorating, and gift-buying, it’s easy to feel stretched thin. You want the season to be joyful and accessible for everyone, but the pressure can be overwhelming. Register Now - everyone is welcome! @b72943d1-a23d-477d-b9ee-07b09bc1c27e" target="_blank" rel="nofollow noopener">events.teams.microsoft.com/event/ae35cace…

ASUK 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/

Our Breaking Down Barriers Network @BarriersDown and @OpenUniversity GRACE Project are collaborating to explore how our lived experiences shape our lives and our healthcare 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/raresummit25-l…

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/.../vaccinatio…

@KerryLeeson is delighted to be presenting 'Getting Comfortable with being Uncomfortable' at the Rare Disease in HealthCare: Balancing Between Hype and Hope Conference today in London #RareDisease @RettUK @lifearc1 @GreatOrmondSt @GeneticAll_UK @RareBeacon @NHSEngland @NHSuk @NHSEnglandLDN

@Gov takes first steps to deliver neighbourhood health services in most #deprived areas. @DHSCgovuk #10YearHealthPlan is bringing care closer to home with neighbourhood health services. Starting in areas with greatest need, people will get better joined-up care to help them with their health and wellbeing. Learn how they are tackling #HealthInequalities and making care more convenient 👇 gov.uk/government/new…

Excellent session run by @amicusrx1 at the @ConfedExpo, we were delighted to be involved @KerryLeeson Individually #rare collectively common, your role in closing the health #inequality gap. #nhsconfedexpo

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

Just in case you missed the AS Community 'Off the Record' Podcast Hear a few things you didn't know about us!! @AlstromAngels @AlstromGermany @AlstromInternat @rarediseaseday @RNIB @DeafblindUK @GeneticAll_UK @RareRevolutionM @RareBeacon @camraredisease alstrom.org.uk/podcast/

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-…

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