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#RareWalesCPG: Senedd support for people living with rare, genetic and undiagnosed conditions

#RareWalesCPG: Senedd support for people living with rare, genetic and undiagnosed conditions

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 #RareCPGWales is a campaign run by Genetic Alliance UK to enable people to easily find and get in touch with Members of the Senedd, asking them pledge their support for rare, genetic and undiagnosed conditions. The campaign aims to increase awareness of rare conditions within the Welsh Parliament and therefore influence positive change for those individuals and families affected by rare conditions. 

Please use our email template to ask your MS to advocate for betetr care, addressing the challenges you face with your rare, genetic or undiagnosed condition.

In the email, we ask for a meeting with the MS to ...

 #RareCPGWales is a campaign run by Genetic Alliance UK to enable people to easily find and get in touch with Members of the Senedd, asking them pledge their support for rare, genetic and undiagnosed conditions. The campaign aims to increase awareness of rare conditions within the Welsh Parliament and therefore influence positive change for those individuals and families affected by rare conditions. 

Please use our email template to ask your MS to advocate for betetr care, addressing the challenges you face with your rare, genetic or undiagnosed condition.

In the email, we ask for a meeting with the MS to discuss these challenges. If you are successful in securing a meeting with your MS a member of our team would be happy to support you in that meeting, or take the meeting on your behalf. 

Now is a pivotal moment for the rare, genetic and undiagnosed community with the release of the UK Rare Diseases Framework and the development of national action plans designed to improve experiences of people affected by these conditions. 

It is therefore so important that Parliamentarians are aware of the challenges faced by people living with undiagnosed conditions so they can represent their constituents effectively and influence change.

You can also contact your representative in Westminster.

If you have any questions or would like more information, please contact [email protected].

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Ask your local representative to support people living with rare, genetic and undiagnosed conditions

Tell your MS to register their interest in Cross Party Group on Rare, Genetic and Undiagnosed Conditions. Your message will have more impact if you can add details as to why this is important to you.

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