“We have met the enemy and it is us”: Healthcare professionals as the barrier to health equity for people with intellectual and developmental disability - Miner - Research in Nursing & Health - Wiley Online Library onlinelibrary.wiley.com/doi/10.1002/nu…

Learning disabled people excluded from voter registration ad but why? channel4.com/news/learning-…

A thread worth reading. So much diversity in characters and plot not seen elsewhere , opportunities for so many actors and other talented creatives, now lost for good.

Being a parent carer throws something at me that I'm not sure I can navigate or cope with nearly everyday, but then I find a way.

"Contrary to popular belief, being inclusive requires more than giving people a seat at the table. It requires giving those people a voice at that table."

Today sees the launch of the Good Lives Manifesto 2024. The needs and priorities of people with a #LearningDisability should and must be included by their MPs and governments. Share the Good Lives Manifesto and help to make #GoodLives a reality. ➡️tinyurl.com/mr27c84r

Great to be attending #ECRD2024 online & presenting our poster about BSMS work (funded by Wellcome) researching the lived experience of rare disease through arts-based and creative methods, focussing particularly on our co-produced poetry collection, Helix of Love

Undoubtedly the biggest challenges come from lack of understanding amongst professionals and underfunded support systems.

How can the system work fairly when the SEN team don't respond to phone calls and emails and so the parent can't access the information they need #SEN #transition #equality #education #SENDnationalcrisis

For day 1 of #GenomicsConversation week we're asking 'Are we there yet?' Our friends at NHS Central and South Genomics have put this question to Lynch Syndrome Clinical Nurse Specialist Caroline Stone: youtube.com/watch?v=Hnf9BM…

Pleased to be part of #genomicsconversation week with NHS Central and South Genomics talking about #undiagnosed #raredisease and the part #genomicmedicine plays

A 10 year olds account of managing their first day #backtoschool. Bridget Phillipson it's not as black and white as you see it. First we need better #disabilityawareness #autismawareness and a system that properly supports children to attend rather than punish them when they can't.

Absolutely! Awareness and advocacy for people living with #undiagnosed conditions needs to be high on the agenda of any organisation supporting #rarediseases

Brilliant and impactful. All voices need to be heard in #healthresearch. Big fan of the use of poetry too.

This was great, and accessible to listen to even for those who are not clinicians 😊

Another fantastic piece of work from Dr Rich Gorman and Ethixbird amplifying #raredisease voices in endlessly creative ways. Loved being able to use postcards to share some pretty significant moments, feel heard, and be understood.

We shared this compilation video of parent carer films today, grab a cup of tea and maybe a piece of cake and take a look ... drive.google.com/file/d/12YxNBH…

What happens when I go for whole genome sequencing? Katrina Stone explains 🧬 Tune in to our latest episode where Katrina explains why someone may have whole genome sequencing for a rare condition, in less than 5 minutes. Listen to the episode: ow.ly/PbZl50UpbKf

"A variant of uncertain significance is a gene variant that sits in the grey area. In other words, it could be causing the condition, but also it might not be." Learn more about variants of uncertain significance in the blog linked here: ow.ly/Prrq50UVrt6