NHS "isn't delivering equitable care for rare diseases" A Genetic Alliance UK report claims the NHS is failing to meet the needs of many of the 3.5 million people in the country who live with rare diseases.

A report from #GeneticAllianceUK has claimed that the #NHS is failing to meet the needs of many of the 3.5 million people in the country who live with a #raredisease.

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We’ve been out and about today with #GeneticAllianceUK and #genomicspartnershipwales at the #seneddwales for a drop-in event.

It was great to meet MS’s Mabon ap Gwynfor and Llyr Gruffydd as well as patient support groups working to improve the lives of those affected by rare conditions.

#Genomics

It's been great to be part of the #UniqueCharity Family Information Day in Cardiff for those affected by rare chromosome and gene conditions.

We were highlighting our work along, with that of #GenomicsPartnershipWales, #AllWalesMedicalGenomicService, and #geneticallianceuk.

#PatientEngagement

Rare Disease Day 2025 Rare Disease Day is an important international awareness day that takes place annually on 28 February (or 29 February in leap years). This date was chosen because 29 February is the rarest day of the ...

and today, #GeneticAllianceUK published 'More than you can imagine: Opportunities for improving the lives of people living with rare conditions'.(geneticalliance.org.uk/campaigns-an...)

Definitely my favourite slide from the evening! 👏🏻🏴󠁧󠁢󠁷󠁬󠁳󠁿 By Dr. Jamie Duckers & Rhiannon Edwards from the #Wales National Rare Diseases Implementation Network

‘Wales is small enough to do great things’ 🌟
#RareDiseasesDay #2025 #GeneticAllianceUK

💜💚 Great evening at #RareDiseaseDay 2025 @norwegianchurch! Updates on #Wales #Rare Diseases Action Plan, insights from Dr. Jamie Duckers & Rhiannon Edwards, and achievements of the National Rare Diseases Implementation Network—plus the presentation of a wonderful anthology! #GeneticAllianceUK