Office for Rare Conditions Glasgow
@ORCGlasgow
The Office for Rare Conditions aims to raise awareness of rare conditions, enhance the quality of care provided & promote participation in multi-centre research
ID:808676540003348482
http://www.officeforrareconditions.org 13-12-2016 14:14:46
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Some excellent work produced by Metabolic Support UK on their 'Thoughts into Action' project which explores what quality of life is as determined by people with a Inherited Metabolic Disorder. Read more about the project here: metabolicsupportuk.org/news-and-event…
Do you know where to get the Right Care, in the Right Place?
Use this guide to find the care you need quickly, safely and as close to home as possible.
Screenshot onto your phone.
#RCRP #NHSGGC #NHSInform #NHS24 #NHSScotland
An interesting article on 'Rare diseases and the role of primary care' from PulseToday (October 2023).
Have a read here:
pulsetoday.co.uk/clinical-featu…
We're excited to be attending a special event hosted by Bob Doris Scottish Parliament this evening. Family Fund are marking their 50th year and presenting their latest research project ‘Window to our world’ which shares stories from families raising disabled children. #FF50
Want to know what rare disease research has been taking place across the UK over 5 years?
Take a read of this recent report that gives an overall picture of what rare disease research has been taking place, where it was happening or who it was funded by: openresearch.nihr.ac.uk/documents/3-45
📢Exciting news! Claire, our Patient Navigator, is a finalist for 2023 Scottish Health Awards for the category Tackling Health Inequalities. A big thank you to Glasgow Children's Hospital Charity, NHS Greater Glasgow and Clyde, The ALLIANCE and University of Glasgow for their continued support of the Patient Navigator role.
During #ScottishChildrensHealthWeek our team hosted a stall with Office for Rare Conditions Glasgow in the Atrium at Royal Hospital for Children, Glasgow. It was great to give out our 2023 Activity books and see this wonderful display from the Play Team! Thanks for having us #MyHealthMyRights Children's Health Scotland #BeMoreBear
Do you have an interest in rare conditions?
Come along to our next lunchtime webinar on Wednesday 25th October where the spotlight will be on Neurofibromatosis Type 1!
We have some fantastic speakers lined up, see the programme below!
To register: link.webropolsurveys.com/EP/E2ED0CA51B5…
Are you affected by #RareDisease ? Our #60SecondsOfRARE campaign could be for you.
If you'd like to get involved and be a voice for your RARE community, email Becky at [email protected].
We can't wait to hear from you!
Come and visit us at Buchanan Galleries this weekend for our pop-up furniture shop!
Find the perfect piece for your home on the first floor of the centre on Saturday 19th and Sunday 20th of August 🏡
Registration is open for our Neonatal Study Day- Monday 4th September 2023! 9am-4pm!
This year we have expert speakers on rare skin, neurological, respiratory and endocrine conditions & an update from our Patient Navigator!
Register here: glasgowchildrenshospitalcharity.org/early-manageme…
Glasgow Children's Hospital Charity
Sarah, Rhianne and Bear are Glasgow Children's Hospital Charity hosting a stall with Family Fund, Contact and Office for Rare Conditions Glasgow. We have lots of fun things to do, info on health rights and referral forms for our SMS Programmes. #MyHealthMyRights
Yesterday Bear and I got to meet Ziggy from Office for Rare Conditions Glasgow! It was lovely to chat to Liz all about ‘Alina Meets The Doctor’ and our SMS programmes. Thanks for having us! Children's Health Scotland #MyHealthMyRights
Are you a healthcare professional working in Scotland?
We would love to hear about your experience of caring for those with rare conditions. Have your voice heard in Scotland! Follow this link to take the survey: smartsurvey.co.uk/s/rareconditio… Genetic Alliance UK
