UK Rare Diseases Framework Westminster Hall Debate took place on 24th March.
The Chair of the All Party Parliamentary Group on Rare, Genetic & Undiagnosed Conditions in Westminster, Liz Twist MP secured a debate on the UK Rare Diseases Framework. Members raised important points around expansion of newborn screening programmes, access to timely diagnoses and treatments for rare conditions, education of health professionals and collaboration between UK nations in developing Action Plans to implement the Framework.
The debate was oversubscribed by members. The full transcript and a video recording of the debate can be viewed here in text or on video.
In respect of Welsh representation, Christina Rees, MP for Neath spoke about the rare condition, phenylketonuria and access to the treatment Kuvan and Liz Saville Roberts, MP for Dwyfor Meirionnydd spoke more generally about Welsh implementation of the Framework and urged for publication of Action Plans in each nation during 2021.
For more information about rare disease policy work, please contact Emma Hughes: emma@geneticalliance.org.uk
