Rhiannon Edwards

[Rare Disease Implementation Network @NHSW_RDIG]

Great to see Health Minister @Eluned_Morgan getting in the spirit early and showing her support for #RareDiseaseDay by wearing stripy socks. Diolch yn fawr, Minister.
Join in on 29 Feb and send us your stripy sock pics to show support for everyone affected by #RareDiseases

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

Looky, Looky
This evening #Wales Parliamentary reception for @rarediseaseday
6-8 pm Norwegian Church #Cardiff Bay
#RareDisease

cc @WalesGenePark @GenomicsWales
@HEIW_NHS
@GeneticAll_UK

[Rare Disease Implementation Network @NHSW_RDIG]

So lovely to support the ‘what matters most exhibition launch’ in the Senedd last night. Watching @samebutdifferent raising awareness of the need to talk about palliative care and dying well. #FOG2024

[Rare Disease Implementation Network @NHSW_RDIG]

Heddiw yw'r diwrnod. Os ydych chi yn y @FoGenomics dewch i wrando ar y sesiwn sy'n canolbwyntio ar Glefydau Prin ar y llwyfan cudd. #FOG2024

[Rare Disease Implementation Network @NHSW_RDIG]

Rydym yn falch i weld @GenomicsEngland Richard Scott yn siarad am bwysigrwydd cynrychioli amrywiaeth o fewn bio-ddata ac ymchwil. #FOG2024

[Rare Disease Implementation Network @NHSW_RDIG]

Mor hyfryd i gefnogi ‘lansiad yr arddangosfa'r hyn sydd bwysicaf’ yn y Senedd neithiwr. Yn gwylio @samebutdifferent yn codi ymwybyddiaeth o'r angen i siarad am ofal lliniarol a marw yn dda. #FOG2024

[Rare Disease Implementation Network @NHSW_RDIG]

We'll be watching with interest the outcomes of the generation research study starting soon in England, and how they benefit the population of Wales in newborn screening for treatable genetic conditions. #FOG2024

[Rare Disease Implementation Network @NHSW_RDIG]

Mae GGCP yn falch i gynrychioli Cymru ar y llwyfan rhyngwladol i siarad am weithrediad y Cynllun Gweithredu ar gyfer Glefydau Prin. #FOG2024

[Rare Disease Implementation Network @NHSW_RDIG]

We are grateful for the support of all our partners and stakeholders, particularly our Rare Disease Implementation Group, the Genetic Alliance, and the Genomics Partnership Wales ‘sounding board’ for their insight.

[Rare Disease Implementation Network @NHSW_RDIG]

This comprehensive plan is based on recommendations from reports coproduced with patient groups about how to improve services for people in Wales affected by Rare Diseases.

[Rare Disease Implementation Network @NHSW_RDIG]

We will continue to work in line with the principles of A Healthier Wales and the UK Rare Disease framework, as well as working alongside our colleagues in England, Scotland, and Northern Ireland.

[Rare Disease Implementation Network @NHSW_RDIG]

Following the exciting news that the SWAN clinic has received funding for another year, we look forward to seeing the impact for patients and colleagues supporting those without a diagnosis.

[Rare Disease Implementation Network @NHSW_RDIG]

We are pleased to focus this year on working with colleagues in @DHCWales to scope the potential of digital solutions to improve communication and the coordination of care.

[Rare Disease Implementation Network @NHSW_RDIG]

We are excited to share our progress over the last year in our first Wales Rare Disease Action Plan progress report and are looking forward to building on these positives this year.

[Welsh Government Health and Social Care @WGHealthandCare]

We're pleased to be able to share our refreshed Wales Rare Disease Action Plan and progress report from 2023. ☑️

This is a comprehensive plan to improve the service delivery for those in Wales impacted by Rare Diseases.

👇
https://t.co/pQ5XFFQC8g

[Neurological Conditions Implementation Group @NCIG_NHSWales]

We are at the Conwy Business Centre in Llandundo for our second Neurorehabilitation Workshop.  Neurological Conditions Co-ordinator, Rhiannon Edwards, is opening the day discussing the vision for the future of Rehabilitation. #NeuroRehab2023

[Neurological Conditions Implementation Group @NCIG_NHSWales]

What the system should be:  The Rehabilitation Principles. 
Delegates are creating personas and exploring what the system should look like. Seeing the bigger picture rather than the condition. #NeuroRehab2023

[Neurological Conditions Implementation Group @NCIG_NHSWales]

NCIG Co-Ordinator Rhiannon Edwards closing the meeting. ‘Going forward, let's see where we can make a positive impact on patient care.’ #NeuroRehab2023

[Bethan Edwards @bethanedwards_]

For those that don't know, I am soon off to pastures new with the fab @NTWales External Affairs Team🌲

What better way to share the news than a lovely letter from @vaughangething celebrating my time at @MarieCurieCymru, and a final Senedd fundraising event this afternoon💛

[Marie Curie Cymru @MarieCurieCymru]

📢 If you'd like to read the full paper, its findings and its recommendations, in English or in Welsh, you can find them on the following page: https://t.co/7j9jzOTeWf