Network for nurses interested in rare diseases gains charity status

The move marks an “important milestone” in the history of the Rare Disease Nurse Network (RCNN), which was first formed less than a decade ago in 2016.

“Our organisation needs to recruit more nurse members, advisors and volunteers”

Michelle Conway

Comprising rare disease nurses, genetic counsellors, affected adults or parents of children with a rare disease, the RDNN said it aimed to become the ‘Macmillan of rare diseases’.

It wants to create better services and improved information networks, enabling specialist nurses and other healthcare professionals to provide stronger support and signposting for patients.

The network became registered as a charity in July, noting that there was a huge need for additional nurse support for all living with rare diseases in the UK.

Michelle Conway, the RDNN’s interim chief executive, said: “This is an important milestone for the RDNN as we strive forward on our mission to provide a national and international network of specialist nurse support for every person with a rare disease.”

Future plans include sharing best practice and creating a patient support network, said Ms Conway, who became aware of the needs of patients with rare diseases after a friend’s child received such a diagnosis.

The new charity, which is seeking volunteers and members, also hopes to run an inaugural conference for nurses on rare diseases in February 2023.

“Unfortunately, because rare diseases are usually multi-systemic and multi-symptomatic, the average time for a patient with a rare disease to receive a diagnosis is five years,” she told Nursing Times.

“This can be highly stressful and tiring for patients, who, due to poor infrastructure and poor information-sharing, may have to travel many miles to multiple medical appointments,” she said.

“For this reason, our organisation needs to recruit more nurse members, advisors and volunteers, to support these patients,” she added.