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Welsh Cross Party Group on Rare, Genetic and Undiagnosed Conditions

The Cross Party Group (CPG) on Rare, Genetic and Undiagnosed Conditions provides an opportunity for Members of the Senedd (MSs) of all parties to meet and discuss the challenges faced by people living with rare, genetic and undiagnosed conditions in Wales.

Genetic Alliance UK provides the Secretariat for the CPG.

Patient organisations, researchers and health professionals that support people living with rare, genetic and undiagnosed conditions in Wales may join the group as members, and people living with a rare condition in Wales may attend meetings.

Due to the 2021 Welsh Parliament Elections, from midnight on 24 March 2021, the CPG will cease to exist. Following the election, Genetic Alliance UK will seek to re-register the CPG.

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Cross Party Group Final Report 2021

On 24 February 2021, the Cross Party Group published its final report, following evidence heard over the 5th Assembly term (2019-2021 parliamentary session).

The report identifies a series of recommendations which would improve the lives of people affected by rare conditions across three broad themes: the effect of rare diseases on mental health, access to orphan medicines and the impact of COVID-19 on those affected by rare conditions. 

The report is intended to inform implementation of the UK Rare Diseases Framework and the development of the new Welsh Action Plan for Rare Diseases.

MEMBERSHIP

During the 2016-2021 parliamentary session, Angela Burns MS (Conservative) chaired the group and Mike Hedges MS (Labour) and  Helen Mary Jones were members of the CPG. Genetic Alliance UK provided the Secretariat.

Due to the 2021 Welsh Parliament Elections from midnight on the 24 March 2021, the CPG will cease to exist and there will not be an active membership of the group.

Following the election, Genetic Alliance UK will seek to re-register the CPG.

If you would like to join the CPG as a new member in the new parliamentary session, please contact: [email protected]create new email

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What has the CPG worked on?

During the 2016-2021 parliamentary session, the CPG has considered a number of issues raised by the rare, genetic and undiagnosed community in Wales. These include:

  • The impact of rare conditions on mental health
  • Lack of coordinated care for rare conditions
  • Improving diagnosis of rare conditions
  • Access to orphan medicines for rare conditions
  • Impact of Covid-19 on people living with rare, genetic and undiagnosed conditions in Wales

 

Minutes of meetings from the 2020/2021 parliamentary session can be downloaded HERE

Full details of CPG membership can also be found on the Welsh Parliament website HERE

Contact the Welsh CPG on Rare, Genetic and Undiagnosed Conditions

Genetic Alliance UK provides the Secretariat for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions.

If you would like to know more about the group, attend a meeting or raise a topic for consideration by the CPG, please contact [email protected]create new email

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