The Rare Disease
Nurse Network

Since 2016, Cambridge Consulting Network, a body of University of Cambridge students, have been helping us gather information and evidence to assess the need, viability and cost/ time-saving implications of a  Rare Disease home nursing service. 

A bit more about the project

The aim of this project was to evaluate how telemedicine could increase the efficiency of rare disease nurse-patient interactions and support rare disease patients and carers to access medical support in their own homes.

A survey was used to establish the feasibility, acceptance and patient/carer view in regards to telemedicine as a potential tool for the delivery of this service. Natalie Rebeyev, who led the CCN team for part of the project, commented that:

By and large, we have seen that caring for patients with rare diseases is a great concern for their caregivers and loved ones. Not only is there a dire need for a rare disease nursing service, there is also strong evidence for a telemedicine pilot programme to help ease the burden of care. Many patients travel long distances to reach a care which often takes lots of time and money. A project of this nature will not only bring about millions of pounds in cost savings but will, most importantly, empower patients to take control of remotely managing their conditions and decrease the number of annual hospital visits. The recurring theme is that patients need a remote network of specialists who can assist them through the use of a telemedicine platform.

Thus far, the survey revealed that the majority of patients are receptive to a telemedicine pilot and over 90% of patients are willing to learn how to use video call applications. Over 50% of respondents believe that telemedicine will help save them time and money.

This article gives an interesting insight into how we might ‘re-imagine the patient journey’ through technology and you can read more about The Rare Nursing Debate in Cambridge on our blog. 

The Rare Disease Nurse Network today

In 2018, following CRDN’s incubation period, the Rare Disease Nurse Network (RDNN) became a separate organisation with its own trustee board with the skills to further its development.

Currently, RDNN is looking to develop a volunteer nurse network to help alleviate the pressures on families and patients affected by rare diseases, to develop a website to help link nurses with experience of rare disease together, and ultimately develop connected health technologies to improve care.

RDNN have been supported by pharmaceutical companies and have also applied to the Big Lottery Reaching Communities programmes.

For more information contact Jo in the first instance.

If we all got involved, imagine the difference we could make? Don’t just follow us, interact with us and join our thriving rare disease community! There’s lots of ways right here to begin your journey with us…

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