Skip to content

Engagement strategies for a rare disease charity

How we tapped into the ideas and knowledge of the wider organisation to develop strategies for growth and influence

MPS Society helps people with rare disease and their families navigate their way through diagnosis, health and social care and education.

The comms team wanted to understand how best to reach each audience and build an engagement journey to make sure members were getting the support they needed, members and their families knew why and how to donate, and stakeholders with power and influence were creating the conditions for members to thrive.

What was our challenge?

Working around three pillars of delivering exceptional advice and support and advocating for world class clinical care and effective treatments, MPS Society wanted clarity around their offer for members, their ask for donors and their positioning with decision-makers and influencers. 

As the only registered charity providing professional support to individuals and families affected by MPS, Fabry and related lysosomal diseases in the UK, the majority of people who should know about MPS Society had sought them out and become members. But with a long diagnostic and personal journey requiring lots of advice and support, MPS Society wanted to be sure they were meeting people’s needs while building a strong donor base among their small community of 1,750 people, their families and friends.  

At the same time, MPS Society knew how hard families were finding getting the right diagnosis and then subsequent health and social care support, and were determined to improve members’ experiences through advocating for change among decision-makers. 

How did we approach the problem?

Starting with insight, we looked at internal data around numbers and behaviours of members and individual donors so we could create a pathway to move new members into service users to giving one-off donations into regular giving. 

Based on data from actual and requested services, we segmented the offer for members based on their health odyssey – surfacing the right support at the right time in their diagnostic and personal journeys. And using insight from the advocacy and support, comms and fundraising teams, we tested the right time, right channel and the right words to ask members for donations to support the charity’s work. 

Looking outside the charity for stakeholders with the power to make members’ lives better, we started our influence project by asking colleagues from across teams, including people with lived experience and the Board, to capture the stories of members as they look for: exceptional advice and support; world class clinical care; and effective treatments. We agreed the improvements we need to see – backed up with evidence to explain the benefits of our proposals.  

We then held a stakeholder mapping workshop to prioritise who the charity thinks holds the money and power to make the improvements, before thinking about each stakeholders' challenges and concerns and describing how MPS Society could help, so creating a series of messages for each group.  

What was the outcome?

For the comms team, the clarity of audience, message and channel gave focus to their work which in turn helped them articulate what they needed from other colleagues. This clarity also helped them build a content calendar around key dates and opportunities, so balancing comms across audiences and managing workload in busy and slow times. 

As a result, the charity saw an increase in new users to their website, a rise in the number of pages viewed and an increase in time spent on the site. 

Vic and the team are different to other consultancies as they work with our staff to give them the skills they need to do the job better in the future. It’s not just about filling a resource gap.
Helen Crawley, Head of Communications, MPS Society

We also offered support in planning MPS Awareness Week, the charity’s annual awareness campaign. This included setting objectives for the campaign, identifying key messages and target audience and providing press and media support.  

MPS Awareness week raised £5,000 and total social reach increased by 25% compared to previous campaign weeks. We also supported with social media content, other press support and writing content for the annual impact report.