Genetic Alliance UK's monthly update

News from Genetic Alliance UK

We’re looking for people to review our information!

One of the aims of our team is to improve the lives of those affected by genetic conditions by ensuring that high quality information is available to all who need them. In order to help us meet this objective we produce patient information ourselves. You can find that information on our website. We are reviewing that information and need your help to ensure that the information we produce is of high quality and meets your needs.

Would you be available to review the information on our website?

You can decide how much time you can spare and how often you want to be contacted. You can do it from the comfort of your home. You don’t need any previous experience – we want to know if the information we produce and the language we use is clear. If you want to help us please fill in this short survey.
If you want more information, please contact Mariana Campos or call our offices 02077043141

Do you live in Wales or Scotland? Ask your MSP/AM to back those with rare, genetic and undiagnosed conditions in the new parliament!

We have recently launched our Pledge for Patients campaign across Scotland and Wales ahead of the elections taking place in the devolved nations in May. The campaign aims to engage with prospective parliamentary candidates to pledge support for:

Going into the new Parliament we want as many Welsh Assembly Members (AMs) and Members of the Scottish Parliament (MSPs) to support people like you: people with rare, genetic and undiagnosed genetic conditions and their family members and carers. We need your help to contact those who are hoping to be your representatives in the devolved administrations to ask them to sign up to our Pledge for Patients campaign.

We have provided tools on the Pledge for Patients website including contact information for parliamentary candidates and template letters. Please make the patients and families within your networks aware of the campaign and ask them to support it by contacting their local representatives.

For further information and all the tools that you need, please visit the website.

Our Development Officers in Scotland and Wales can also help:

For Scotland, please contact Natalie:
For Wales, please contact Emma:

Tell NHS England how to decide which specialised services to fund

Deadline: Wednesday 11 May 2016

NHS England is currently consulting on a method for their Clinical Priorities Advisory Group (CPAG) to use when making decisions on which services or medicines should be prioritised for funding. This method is to be used for recommendations for the 2016 - 17 round of new investments in specialised services. How this method works will be of great importance to groups with treatments either currently being assessed or that will be assessed before 2017 - 18. We will of course be responding to the consultation; however we would also encourage anyone likely to be impacted by the decisions to express their opinion.

Continue reading this article on our website.