Did you know... we are on the hunt for a Patient and Public Involvement and Engagement (PPIE) Coordinator? Do you understand the importance of including diverse voices and experiences in research and service developments, then we want to hear from you. alstrom.org.uk/join-our-team-…

BE QUICK! Nominate Alström Syndrome UK to win £1,000 Benefact Group Every penny really does make a difference to those living with this ultra-rare, complex condition. Go on, Go on, it only take a minute and will make a HUGE difference! Thank you! movementforgood.com/index.php?cn=1…

We are proud to be supporting Juvenile Idiopathic Arthritis (JIA) Awareness Week JIA-at-NRAS This year's theme is #ThisIsJIA Join us in raising awareness and share your story, use the hashtag #ThisIsJIA to get involved. Check out their website #JIAAW24 jia.org.uk

Exciting Opportunity to Join our Team! We are on the hunt for a Patient and Public Involvement and Engagement (PPIE) Coordinator. This exciting new role reflects our ambition to further develop the support we offer to individuals and families living with rare and genetic

Today South Asian Heritage Month (SAHM) begins... South Asian Heritage Month This year's theme is #FreeToBeMe SAHM seeks to commemorate, mark and celebrate South Asian cultures, histories, and communities. The month seeks to understand the diverse heritage and cultures that continue to link the

We are delighted to collaborate with Consilium Scientific as they win National Institute for Health and Care Research grant to lead the RareCare project, to ensure that the rare disease community are represented in this important research. RareCare will help decision-makers to improve how the NHS NHS and other

There is still time to get your application in... to join our award winning charity and amazing team!! Closing date for PPIE Coordinator role is 24th July 2024 at 12:00 noon. Now is your chance to make a difference and ensure our diverse communities views are heard... Don't

CLOSING DATE: TODAY 12 NOON There is still time to get your application in... to join our small but mighty team and award winning charity!! We are on the hunt for a Patient and Public Involvement and Engagement (PPIE) Coordinator. Ensuring the voice of our diverse community are

How to Have Fun and Keep Cool! Whilst we enjoy this glorious sunny weather, it is important to remember that those who are older, younger, pregnant and have certain health conditions can be at risk from the heat. The British Red Cross 🧡 have brought together some top tips to stay

Summer is here! 😎 BBC Bitesize brings you indoor and outdoor activity ideas to keep everyone entertained this Summer. From making shadow puppets, growing plants at home to fun filled games - check out the website to find lots of fun and games. bbc.co.uk/bitesize

Remember there is more that connects us than divides us. Alström Syndrome UK and the Breaking Down Barriers Network are proud of our diverse community. We encourage you to check in with your loved ones, friends, and neighbours who may be feeling worried about the recent unrest across the country,

Marvellous Medicine. First gene-editing therapy may cure blood disorder UK Thalassaemia Society The first therapy that uses gene-editing is to be offered on the NHS in a “revolutionary breakthrough” for patients. It will be used as a potential cure for the blood disorder beta #Thalassaemia

Summer Newsletter is out now! Here comes the ASUK Summer newsletter – full of uplifting family stories, and join us in celebrating 9 years of the BBC Children in Need project, discover family grants available, read research updates and much, much more. #AlstromSyndrome

Today is Emergency Services Day! Thank you to everybody who works and volunteers in the emergency services. Our country is indebted to you for your service and the sacrifices you make. National 999 Day NHS NHS England #999Day #EmergencyServicesDay 999day.org.uk

As the kids hurry back to school... Did you know, that MedicAlert UK & IRL supported by Lions International offers free MedicAlert membership and medical IDs to children with medical conditions or allergies, until their 10th birthday? medicalert.org.uk/early-start/

Every minute, the NHS needs three life-saving donations. Give Blood NHS 🩸🩹 urgently need O negative and B negative donors to come forward and give blood. NHS NHS England Find out more and book at blood.co.uk

In case you missed any of the Paralympic Games Games in Paris. You can catch up on all the 549 fantastic medal events over 22 sports... ParalympicsGB finished second, behind China, in the medal table with 124 medals (49 golds, 44 silvers and 31 bronzes). Congratulations to everyone

This #WorldSuicidePreventionDay remember you don’t have to go through tough times alone. There are many organisations who are open 24/7 to support you through your most difficult times Mind Samaritans The Mix Please share this post far and wide.

Plans for tomorrow? You do now... Join us and the The Open University GRACE Project and NHS Central and South Genomics at the British Science Festival's interactive event exploring our diversity and why it's critical that genetic research represents and serves us all equally and equitably

Come and join us today at this interactive event! We're at the British Science Festival with GRACE Project and NHS Central and South Genomics Exploring diversity within genomics and why it is important that we are all represented #BSF24 #BSF2024