Jo Wright

Parent Carer. Advocate for improved understanding of ultra rare, often undiagnosed, genetic conditions. Views my own. Also [email protected]

[Jo Wright @wright_jo]

A video for #undiagnosedchildrensday by Megan aged 10. #genomics #genomicsedu #patientvoice #expertbyexperience #disability #foreveryone @SWAN_UK @genomicsedu @GenomicsEngland

[Jo Wright @wright_jo]

Revise and expand the RSV vaccine programme for vulnerable adults - Sign the Petition! https://t.co/ZG5F5D5Ofy via @UKChange

[Jo Wright @wright_jo]

@LornaFillingham @DrRanj @HealthwatchNL Go you! 😃

[Genomics England @GenomicsEngland]

"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:
https://t.co/uUVQ6UUWEt

[Jo Wright @wright_jo]

@elisabethdw Such an interesting conversation. It's a privilege to get an insight into the lives and experiences of the people who made such a great show.

[Jo Wright @wright_jo]

@elisabethdw @moylie69 @BBCDoctors Great episode, need a part 2 please 🙏

[Genomics England @GenomicsEngland]

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: https://t.co/5KPa1ZSnnk

[Jo Wright @wright_jo]

@rarediseaseday This is a good video but it is a shame there is no acknowledgement that as well as there being over 6000 known diseases there are also more that we are still unable to diagnose. Whether we have a diagnosable condition or not we are all part of the rare community.

[Jo Wright @wright_jo]

@BBCDoctors 😥

[SpinningPlates_CarerMH @SpinPlatesCare]

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 ...

https://t.co/L368cxgu3J

[Jo Wright @wright_jo]

Another fantastic piece of work from @SustainableRich 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.

[Dr Rich Gorman @SustainableRich]

New piece by @Ethixbird & I in @SocCultGeog exploring the social and cultural elements of family life with rare disease, thinking what geography can add to discussions, and being a little creative with our methods by inviting reflections from our participants on a postcard!

[Jo Wright @wright_jo]

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

[Genomics England @GenomicsEngland]

A big thank you to our speakers and everyone who attended last weeks webinar which discussed the genomics behind neurological conditions 🧬

If you were unable to attend, the recording is now live on our YouTube channel, via this link: https://t.co/QMF3D5J0X6

[Jo Wright @wright_jo]

@GenomicsEngland Really enjoyed this, and learnt a lot. It was very accessible to non-clinicians.

[Jo Wright @wright_jo]

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

[AMRC @AMRC]

👉🏽 #INVISIBLE out now!

A film exploring why we need more diverse voices involved in health research.

Visit https://t.co/qwPADlpH2a

#BeVisible

[Jo Wright @wright_jo]

@HastingsJ123 Oh dear, poster needs proof reading

[Jo Wright @wright_jo]

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

[EURORDIS-Rare Diseases Europe @eurordis]

Undiagnosed rare diseases are a critical yet often overlooked part of our community and that is why we’re proud to be a member of the Undiagnosed Diseases Network!
It is vital that these peoples’ needs are recognised and addressed as they are an integral part of our community!

[Jo Wright @wright_jo]

@educationgovuk There's back to school nerves and then there's overwhelming anxiety that a young person needs the right supports to be able to manage.

[Jo Wright @wright_jo]

@educationgovuk The best thing a parent can do is advocate for their child to ensure appropriate supports are in place for their child to thrive at school. No one wants to give up their own career because their child cannot access school without them there to support and advocate but here I am

[Jo Wright @wright_jo]

A 10 year olds account of managing their first day #backtoschool. @bphillipsonMP 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.

[Jo Wright @wright_jo]

@bphillipsonMP Written by my 10 year old today (names changed for anonymity). What we need is better understanding of why children struggle with attendance, better #disabilityawareness, #autismawareness #reasonableadjustments and an #EHCP system where local authorities are held to account.

[Jo Wright @wright_jo]

@genomicsedu This is great. It would also be really good to include a case study where the rare condition remains undiagnosed or there is a variant of uncertain significance.