I’m Director of Policy at Genetic Alliance UK, the national charity for everyone living with rare, genetic and undiagnosed conditions.
Nick has worked at Genetic Alliance UK for more than 15 years. Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare, and undiagnosed conditions in the UK. The members and the people they support are at the heart of everything the organisation does. Genetic Alliance UK advocates for fast and accurate diagnosis, good quality care and access to the best treatments; actively supports progress in research and engages with decision makers and the public about the challenges faced by our community. Nick co-chairs Genomics England’s working group on returning results for the newborn genomes programme.
Breakout Session: The NHS Newborn Screening Programme. What is is it and how is it evolving?
Nick joins a collection of advocates to explore the NHS Newborn Screening Programme. What are the aims? Who is screened? For which diseases? How do we ensure fair and equitable access? What difference can early diagnosis make? Is it enough? And what next?
My wish for rare diseases:
I want to see genuine continuity for the UK Rare Disease Framework with a leap forward in newborn screening for the UK.
We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking “Accept”, you consent to the use of ALL the cookies.
This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
Cookie
Duration
Description
cookielawinfo-checbox-analytics
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checbox-functional
11 months
The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checbox-others
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-necessary
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy
11 months
The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
