Office for Rare Conditions Glasgow
@ORCGlasgow
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The Office for Rare Conditions aims to raise awareness of rare conditions, enhance the quality of care provided & promote participation in multi-centre research
Glasgow, Scotland
Joined December 2016
Hi all! In 3 weeks, we will host an exciting event over Zoom with our Patient Advisory group. This is a great opportunity to build connections in the rare conditions community! For more information on our Patient Advisory Group, please visit our website. Hope to see you there!
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Want to know more about Realistic Medicine and Future Care Planning for those affected by rare conditions? Watch this short video: https://t.co/2ci0HnjJmC
@NHSGGC @RHCGlasgow @RealisticMed @GCH_Charity
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Delighted to welcome some important visitors to help us explore opportunities to continue and build on our progress - thank you Ms Jenni Minto Minister for Public Health and Women's Health
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There's still time to register for our next event!
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Still time to register for the OfRC next webinar!
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Join us for our next webinar in March, delighted to be working with Behçet's UK @GCH_Charity @RHCGlasgow @NHSGGC @UofGChildHealth
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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 @GCH_Charity @NHSGGC @nhsggcrhcphysio @RHCGlasgow @UofGChildHealth
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Register now for the Office for Rare Condition's upcoming FREE webinar Paediatric Dystonia in Rare Conditions https://t.co/dolhLeyhBe
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Thank you to Professor Zuberi and everyone who came to our Angelman Syndrome Family event, it was a great day! @EJPNeditor @contactfamilies @AngelmanUK
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🌟 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. 🩺💬 📲 https://t.co/7eAqVQ1G4e
#PatientVoice #HealthcareInnovation
link.webropolsurveys.com
Survey Powered by Webropol
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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: https://t.co/6JUByPqlCW
#CarersRightsDay
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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.
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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
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"Rare Disease in the Omics Era" This CIVIS Blended Intensive Programme (BIP) is now online. Students can register now! https://t.co/vuxJh7J1L0 The University of Glasgow is a CIVIS member university
civis.eu
Discover how sequencing methods and multi-omics approaches can be used to describe rare diseases from a molecular point of view and contribute to the diagnosis and management of patients
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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. https://t.co/PbKFmkqxN8
officeforrareconditions.org
International Myotonic Dystrophy Day 15th September! Dr Mark Hamilton, consultant clinical geneticist at the QEUH and chair of the myotonic dystrophy subgroup of the Scottish Muscle Network, has gi…
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The Scottish Differences of Sex Development Network is hosting a free event open to women and older teenagers with Mayer-Rokitansky-K��ster-Hauser syndrome. Families are welcome to attend. SATURDAY 14th September online 10:00 - 13:00 register now using the link or QR code below
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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! https://t.co/Z84uVlOpy9
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