If you are a patient, carer, healthcare professional, policymaker, or represent a patient organisation, we want to hear from you. We need your support to ensure that this set of statements reflects the whole rare disease community.
What a Fantastic walk along the coast on a lovely autumn day🤩🤩🤩🤩
Thanks to all who joined us
Jenny Rathborne MS, Gwenda Roberts Mayor of Penarth, medics for rare disease, SWAN clinic, Nerve tumor UK@RCPath @RCPathCymru@MeenaUpadhyaya@NIJekyll
We were delighted to be joined by @JennyRathbone, Penarth Town Mayor Cllr Gwenda Roberts, Nerve Tumour UK, Swan clinic and health professionals on our Wales Coastal Path walk to raise awareness of rare diseases. 👇
Look at all these genetic counsellors and nurses! We had a fantastic conference meal at @Techniquest Cardiff. Now on to day 2 of the conference #AGNC2024#genechat
Such important work by Zoe Morrison @zoecullen92 and Dr Matthew Spencer on the @SWANUK_Cymru clinic. Some patients are discharged with a diagnosis. Many remain #undiagnosed but complex care needs are addressed #agnc2024#genechat
At the Unusual Suspects back in February, @Jono_Lancaster delivered a very thought-provoking talk you all need to hear. We've put his talk together in a wonderful #podcast episode so you can listen back and hear the whole thing! Go listen now! 🎧👏
https://t.co/3Ee3a2HiZ3
📣 Announcement! The fantastic charity @RaremindsUK are holding upcoming workshops online throughout April and May, providing help & resources to anyone with a rare condition/those caring for individuals with a rare condition. For times & registration details, please see below:
If you want to change the culture, stop valuing one off engagement sessions, hierarchical permission seeking & those annual tick box processes
Be more authentic, consistently engage make kindness & check-ins regular. Make people feel visible & heard at all times
There’s pressures, stress, burnout, anxiety, depression & panic.
There’s tears, breaking points, exhaustion, tensions & worries
All in healthcare.
So please, do what you can to be kind to one another. Even if it’s a small thing, someone could really do with it
Humbled to be in this feature celebrating #InternationalWomansDay. I am thankful to have worked with many inspirational women, both within @CV_UHB and externally, over the past few years who have helped inspire and mentor me to be where I am now 💜