Supporting the not-for-profit Rare Disease Nurse Network to gain charity status

The ask 

To support the setting up of a new charity - the Rare Disease Nurse Network (RDNN). Their aims are to:

• Help improve education amongst nurses and allied healthcare professionals around the challenges of identifying and supporting people living with a rare disease
• Provide a much-needed link between primary and secondary care to effectively signpost referrals to the most appropriate services and specialties and develop improved care coordination

Ultimately, this is intended to benefit both people living with a rare disease and their families.

The insight 

By supporting clinicians in this field, we can help them reach more of the almost four million people in the UK who live with a rare disease.

The idea

Our work has challenged some assumptions and helped steer the RDNN’s direction. Gathering insights through interviews and focus groups with rare disease nurses and patients enabled us to help the charity founders develop their strategic objectives, communications plan and funding applications.  

Creating a strong brand identity and rolling it out across campaign materials enabled the trustees to convey a consistent message while seeking charity status and financial support.

The impact 

The research we carried out with RDNN identified that they can have most impact by ‘helping the helper’. By connecting healthcare professionals both locally in person and nationally online, the RDNN can use the strength of their collective knowledge to overcome the common challenges of all rare diseases.

RDNN gained charity status in July 2022. The vision is strong, but it is still early in its development and continued support is needed for funding to grow. If you would like to get involved, please contact Michelle Conway at michelle.conway@rdnn.org