🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

New (FREE) E-Learning Course on Vascular Ehlers-Danlos Syndrome available for all patients, caregivers and healthcare professionals. eur03.safelinks.protection.outlook.com/?url=https%3A%…

Did you know that each year around 270 babies are born in the UK with a condition known as sickle cell disease? Drop by our stand in the Royal Hospital for Children, Glasgow to find out more about sickle cell and the support offered by The Hope Project. Wednesday 19th June 10-2pm

Wednesday 19th June is #sicklecell awareness day. The Office for Rare Conditions will be in the atrium of RHC with #TheHopeProject. Learn more about the condition from our teaching video from Dr Susan Baird Paediatric Haematologist RHSC Edinburgh glasgowchildrenshospitalcharity.org/assets/000/000…

Read the latest newsletter from the Office for Rare Conditions, Glasgow here #rareconditions sway.cloud.microsoft/DVEzBNV3HXVvop…

I had so much fun at NHS Forth Valley's Health Future Picnic! We will be attending quite a few of them and taking our parachute with us. #Play is so vitally important for children and young people and what a joy it is to take part in Story Play and Health Related Play!

Venue now confirmed!! Teaching and Learning Centre QEUH, Glasgow. There's still a few places left, but hurry... Book now for our 8th annual neonatal study day. Free event! link.webropol.com/ep/earlymanage…

The Scottish Differences of Sex Development Network is hosting a free event open to women and older teenagers with Mayer-Rokitansky-Küster-Hauser syndrome. Families are welcome to attend. SATURDAY 14th September online 10:00 - 13:00 register now using the link or QR code below

International Myotonic Dystrophy Day! Here, Dr Mark Hamilton, QEUH, Glasgow, shares his previous talk highlighting the key features of myotonic dystrophy and its possible presentations in a range of hospital settings. officeforrareconditions.org/myotonic-dystr…

"Rare Disease in the Omics Era" This CIVIS Blended Intensive Programme (BIP) is now online. Students can register now! civis.eu/en/learn/civis… The University of Glasgow is a CIVIS member university

A new process in approach to pharmacogenomic testing, aimed at improving patient care and simplifying the process of requesting, evaluating, and approving these tests. To provide you with a better understanding of these changes, please see below

Kabuki Syndrome Awareness Day! 💚 Wednesday 23rd October We will be in RHC Glasgow, sharing facts and raising awareness about Kabuki syndrome. Come by and say hello! 💚 Kabuki syndrome is a rare genetic disorder affecting an estimated 1 in 32,000 births.

This Carers Rights Day is about carers knowing their rights and how to access them💪🏾 But how much - or how little 😱 do carers really know their rights? We sat down with two carers to put their knowledge to the test! For more info: carers.org/CarersRightsDay #CarersRightsDay

🌟 Have a rare or undiagnosed condition? Your voice matters! Share your experiences by completing the Office for Rare Conditions' Patient Reported Experience Measure. Help improve care. 🩺💬 📲 link.webropol.com/s/prems #PatientVoice #HealthcareInnovation

Thank you to Professor Zuberi and everyone who came to our Angelman Syndrome Family event, it was a great day! Sameer M Zuberi Contact angelmanuk

Register now for the Office for Rare Condition's upcoming FREE webinar Paediatric Dystonia in Rare Conditions link.webropol.com/ep/ofrcwebinar

Our dystonia webinar had our largest ever audience and the speakers received great feedback! If you missed it head over to our website to watch the recording Glasgow Children's Hospital Charity NHS Greater Glasgow and Clyde Acute Paediatric Physiotherapy Service Royal Hospital for Children, Glasgow University of Glasgow Child Health

Join us for our next webinar in March, delighted to be working with Behçet's UK Glasgow Children's Hospital Charity Royal Hospital for Children, Glasgow NHS Greater Glasgow and Clyde University of Glasgow Child Health

Still time to register for the OfRC next webinar!