This week Rosie has joined our team as the new Public Affairs Assistant at Genetic Alliance UK. She will be working closely on the Rare Disease UK campaign and will also be managing the campaign’s social media accounts.
What were you doing before you joined Genetic Alliance UK?
Hello! Well, I have recently moved to London from Leeds where I worked for various third sector organisations coordinating policy-oriented campaigns and projects. These were hugely varied and involved working with a wide range of people and stakeholders on a day-to-day basis, from MPs to university students, patient groups and local businesses. I had previously studied Arabic and Politics at the University of Leeds, during which I spent time living in Egypt.
What attracted you to the role at Genetic Alliance UK?
I am a passionate believer in the need for patient voices at all levels of decision-making when it comes to health policy. As people living with rare diseases know only too well, healthcare is political, and so it is only right that patient groups are supported and are able to form part of our democracy. I wanted to work for Genetic Alliance UK because I think it does an amazing job empowering people living with genetic, rare and undiagnosed conditions by elevating their voices and providing platforms for engagement with decision-makers where it is needed.
What do you most want to achieve at Genetic Alliance UK?
Ultimately, I want to positively contribute to the work being done by patient groups, people living with rare diseases and their families to improve and influence the services that affect them. Primarily, my role will involve supporting the work of the All Party Parliamentary Group on Rare, Genetic and Undiagnosed conditions, contributing to our existing projects on access to medicines for rare diseases and transitions between healthcare settings. Alongside this I will be editing the Rare Disease UK blog and managing the Rare Disease UK social media, so I’m always keen to hear from anyone who wants to share their experiences!
What are your hobbies outside work?
Outside of work, I am an avid cyclist (although I’m still trying to get to grips with navigating London’s one-way streets). I also enjoy reading, watching Netflix and am a big nerd when it comes to keeping up-to-date with UK politics.
I’m really looking forward to getting to know more of you on social media, and if you are interested in writing your own blog or sharing your story, please do drop me an e-mail at firstname.lastname@example.org, or send me a tweet via @RareDiseaseUK.