We are seeking an experienced and skilled public affairs and media professional to join us as Public Affairs and Media Manager. You will drive the public affairs activities of Genetic Alliance UK and be the first point of contact for all media enquiries. You will provide the secretariat to the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, organising meetings, maintaining a close relationship with parliamentarians, writing briefings and drafting speeches ahead of meetings. You will ensure a close synergy between the Cross Party Groups in Scotland and Wales.

You will manage the Policy and Public Affairs Officer and oversee the contacting of parliamentarians and the management and maintenance of accurate records. Working closely with the communications team, you will be responsible for the development and delivery of proactive media campaigns.

A key policy area you will be focussed on will be the implementation of the UK Rare Diseases Framework. As part of this, you will provide the secretariat to Rare Disease UK’s Patient Empowerment Group. You will play a leading role in campaigning on topical issues affecting the rare disease community throughout the UK, including health disparities, Newborn Screening, access to rare disease medicines and the annual awareness raising campaign: Rare Disease Day.

Genetic Alliance UK is 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 and SWAN UK (syndromes without a name).

This is a fantastic opportunity to engage with parliamentarians and journalists to make a positive difference to the lives of people affected by rare, genetic and undiagnosed conditions. You’ll be a key member of the policy team and work closely with the communications team. This is an ideal role for an experienced and skilled public affairs and media professional who is looking to step up into a management role.