Infectious Coverage For Rare Disease Report Launch

Charity tells patients’ stories to coincide with Rare Disease Day


Rare Disease UK supports patients and their families living with a rare condition, with some diseases affecting just one person in the world. Telling their story in a supportive and sympathetic way helps the charity’s profile and fundraising activities.


The Challenge

The trick was to get cut-through against a backdrop of numerous other charity PR activities, and the wider health and NHS agenda.

The Solution

The launch of Rare Disease UK’s report Experiences of Rare Diseases: an insight form Patients and Familiesrequired careful planning and sensitive handling in order to achieve the coverage – and raise awareness levels – required by the organisation.

The Approach

The PR campaign launched the report to the media, backed up with patients’ stories that helped raise awareness of the report’s findings and Rare Disease UK through news stories and news-led features.


The Results 

The launch campaign achieved a reach of 11.2 million and the coverage secured included the BBC, STV, The Independent, The Guardian, The Scotsman.

This was followed by further media relations activity to coincide with Rare Disease Day (officially 29thFebruary) with patients sharing their stories in a range of consumer and regional titles. Coupled with a ‘My Week’ article which Velvet secured in Third Sector, the total reach was 18 million.