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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 specialist nurse network. 

The original 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.

Cambridge Rare Disease Network - Rare Disease Nurse Network 1
Natalie Rebeyev photo

Natalie Rebeyev (pictured above) 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.

Natalie Rebeyev

Cambridge Consulting Network

The Rare Disease Nurse Network today

In 2018, following CamRARE’s incubation period, the Rare Disease Nurse Network (RDNN) spread its wings and established independence from CamRARE with its own board or experts and advocates with the skills to further its development. 

RDNN is now a group of rare disease nurses, genetic counsellors, parents to children with rare diseases and rare disease patients.  CamRARE’s previous CEO, Kay Parkinson is founder and Company Secretary  and Helena Baker, VP of MRN is now part-time CEO. Follow them on twitter at @NurseRare 

Our approach is people-led; we want to forge a new community across disciplines, building on the skills and expertise of highly experienced professionals. We have identified that we can have most impact by ‘helping the helper’. By connecting people both locally in person and nationally online, we can use the strength of our collective knowledge to overcome the common challenges of all rare diseases.

Rare Disease Nurse Network

MedTech Boston article link

This Med Tech Boston 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.

Cambridge Rare Disease Network - Rare Disease Nurse Network 2