Office For Rare Conditions Glasgow

Hi all. We are just about ready to stop for Christmas break and all of us here the Office want to wish you a very happy Christmas! If you don't celebrate Christmas then we wish you a peaceful holiday over the festive period. And we wish you all a prosperous New Year! ☺️

Hello all, hope all is well. I have a couple of things to share with you today from RareConnect. 1.They are looking for people with some rare diseases to share their story. If you are interested then you can visit https://www.rareconnect.org/en/community/ rareconnect. 2. They have also expanded their online communities and now have a total of 174, recent additions include : Barth syndrome, Cavernous angioma, Coffin-Siris syndrome, Costello syndrome. 3. (last one) they have shared with us a link to film they made of their live webinar about "Hemangioblastomas of the central nervous system in patients with von Hippel-Lindau" which you can watch by following this link https://youtu.be/F0wSl9AQxrg

Some after work christmas shopping this evening and called on the very talented volunteers from the Glasgow Children's Hospital Charity for help. Very happy customer and in awe of their wrapping skills, I gave them challenging wraps. Thank you so much. I may be back 😊

Anyone here an artist? Or if you know any then why not tag them? 😃

Hi all - tomorrow (7/12/18) Liz and I (Mari) will be in the outpatient area (from 9am) with a stand and some questionnaires. Research is an important part of what the office does, and we are gathering data on patients' experiences, so we would be very grateful if you are around tomorrow morning, and you have the time, if you could come by and fill it out for us. Also - come by and say hello! It would be lovely to meet some of you in person 🙂

May be of interest to some.

Jack Frost has been weaving his magic throughout the night! I tell you, living on a steep hill and trying to navigate my way up that hill to catch my bus this morning was no easy feat. If you are heading out today stay safe and wrap up warm. It's very cold and unlike Elsa the cold does bother us 😅

Good morning! Hope everyone had a lovely weekend. Remember, you are welcome to share your news with us. Feel to post! 😄

Have you seen these (lets face it! super-cute) Christmas cards? on sale at the #GCH_Charity website (https://www.glasgowchildrenshospitalchar ity.org/shop) They have other designs (also very cute) - if you haven't got your Christmas cards yet then you know where to start looking.

I love the drive in (we love the drive in, we love the drive in) Down at the drive in....so good the Beach Boys wrote a song about it! What a lovely way to spend at Friday night. And Who doesn't love a bit of Kris Kringle or Buddy the Elf at Christmas time?! 🎅🤶🎄☃️

Good morning all! I hope you have all had a good weekend. If you have any info you think the group would be interested in or benefit from, or maybe you just want to share some news, then feel free to post on this page. 😄

Hello! So there's been some changes here at the Office for Rare Conditions and I am new, my name is Mari (edited to include this info) and I can't wait to meet you all. I am the new administrator for the office and I am still learning (I am on my third day) but feel free to leave a comment, maybe say hi. I promise we will be back to regular updates here, and on our twitter pages, really soon. Do you follow us on Twitter? https://twitter.com/ORCGlasgow 😄

Looking forward to going along to this day on Saturday 22nd September!

We are delighted to be working together with the Tuberous Sclerosis Association to host their annual Scottish get-together here in Glasgow this coming Saturday, 25th August. There's still 1 day left to sign up to attend!
#RareConditions #TuberousSclerosis #RareCommunity

"Diagnosing rare genetic diseases requires a slow process of educated guesswork". Could new and improved technology improve the process and help more patients reach a diagnosis? #RareConditions #Diagnosis #Genetics