Office for Rare Conditions Glasgow

Happy new year to our ORC community! To start 2026, we want to shoutout our January awareness days as well as our tabling event in the Queen Elizabeth GCH. Checkout our recent winter newsletter and stay tuned for our Patient Advisory meetings announcements. We hope to start the new year off strong, so if you or someone you know could be supported by the ORC, please contact us!

To end December with wholesome holiday fun, please use this guide for a week of getting crafty. Whether you and your family do one or all, tag us so we can see your beautiful creations!

The Office for Rare Conditions (ORC) is happy to announce and share our Winter 2025 Newsletter! In this issue, we include what the ORC has been up to, upcoming events, resource shoutouts and spotlights on great work being done in our rare condition community. To dive into more information on the work we do and for additional resource support, please check out our website and contact us! Wishing everyone a very merry festive season full of warmth, love and holiday cheer!

Good morning all! This is just a wee reminder that our patient advisory group meets this week. This event is welcome to all and a great opportunity to meet people in the rare conditions community. We hope to see you there!

Hello all, December is steadily approaching! This month, we celebrate the rare conditions community with these dedicated awareness days. Wishing everyone a month full of love, light, and holiday cheer.

We are extending an opportunity to those in the West of Scotland that have a rare condition or are supporting someone with a rare condition to report and share their experience. If you have a spare 5 minutes to fill out the PREMs, it is greatly appreciated as it helps us tailor services to the needs of the rare conditions' community. Participants are able to remain anonymous and revoke their participation at any given time. Thank you so much in advance!
For anyone needing translation, the NHS provides a Clear for All service if you would like to participate in the survey. Any issues or queries, please reach out to the ORC!

Hi all! In 3 weeks, we will be hosting an exciting event over Zoom with our Patient Advisory group. This is a great opportunity to build connections and share resources in the rare conditions community! Join us to mingle, celebrate the holidays, express wants and needs for the new year, introduce event ideas and ask questions. For more information on our Patient Advisory Group, please visit our website at https://officeforrareconditions.org/patient-advisory-group-2/
The Zoom link for the meeting will be available upon registration. Any issues, please contact the ORC. Hope to see you there!

Happy fall everyone! With the beginning of November, we wanted to share awareness for specific rare conditions this month. Make sure to celebrate the communities interacting with and supporting these rare conditions as well as sharing information about them! Visit our website to gain more information and resources about rare conditions.

Looking for some learning from the comfort of your armchair? Head to our website and catch up with The Glasgow Webinar Series in Rare Conditions -

Office for Rare Conditions Glasgow The Office for Rare Conditions is working to put the patient to the forefront, providing information and support to all affected by rare and undiagnosed conditions.

Dads! Tomorrow night (Wednesday) we have a special online session just for dads of children/adults with PWS.
This is a friendly and informal group run by a PWS dad.
It's a chance to connect with others in the same situation, talk about any concerns or issues, and maybe even use your experience to support a fellow PWS dad.
Just register via our events page if you want to come along and we'll send you the link to join https://www.pwsa.co.uk/events
If you're not a PWS dad but you know one - please pass this on! This group really needs new members but most of our followers on social are women...

Today we said a fond farewell and happy retirement to Liz, we will miss you! 💜

We were delighted to welcome some important visitors in August 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, Dr Lesley Thomson KC Chair of the NHSGGC Board and Mr Jamie Redfern Director for Women’s and Children’s Health NHSGGC