Experience

Genetic Alliance UK

• United Kingdom
• Non-profit Organizations
• 1 - 100 Employee

• Director of Policy

  • Apr 2014 - Present

  UK and Europe I am Director of Policy at Genetic Alliance UK, the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do. We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community. We run two… Show more I am Director of Policy at Genetic Alliance UK, the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do. We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community. We run two long standing projects: Rare Disease UK, a campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that people and families living with rare conditions have equitable access to diagnosis, high quality services, treatment and support. SWAN UK (syndromes without a name), the only dedicated support network in the UK for families that have a child or young adult with an undiagnosed genetic condition.

• Joint Interim Chief Executive

  • Apr 2021 - Jul 2022

  Role shared with Lauren Roberts (Director of Engagement and Support) to provide interim leadership and management of the charity. Responsible for delivery of organisational strategy, governance, finances and income generation.



Genetic Alliance UK

• United Kingdom
• Non-profit Organizations
• 1 - 100 Employee

• Policy Analyst

  • Feb 2009 - Mar 2014

  UK and Europe



Genetic Interest Group

• Non-profit Organizations
• 1 - 100 Employee

• Policy Officer

  • Jan 2006 - Jan 2009

  UK and Europe

• Project Officer

  • Sep 2004 - Dec 2005

  UK