Rare Disease Nurse Network

Sharing knowledge, creating networks and supporting care in rare diseases.

Support

At RDNN, we believe that there is a huge need for additional nurse support for all those affected by rare disease.

We are rare disease nurses, genetic counsellors, parents to children with rare disease, people that have rare diseases ourselves or people who are passionate about making a positive difference.

Our aim is to become the “Macmillan of Rare Disease”; we are determined to create better services for those affected by rare diseases and improved information for nurses, and other healthcare professionals, to help them provide stronger support for their patients.

Our Mission and Vision

MISSION

To provide a network of specialist nurse support for every person with a rare disease.

VISION

To deliver innovative support to nurses (and other healthcare professionals) involved in rare disease, so that they are more empowered to provide better help for rare disease patients and families on their rare disease pathway.

To establish a network of specialist nurses globally providing support and care for everyone affected by a rare disease.

Doctor holding a phone
MAKE A DIFFERENCE

We are in need of your support so that we can continue to support patients and their families with rare disease.

Contact us

News and Events

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News

RDNN Achieves Charitable Status

Press Release| August 2022
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News

RCN are attending the RCN Congress in Glasgow

6th-8th June 2022
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News

Care Coordination in Wales- Recommendations from the Rare Disease Nurse Network to the Rare Disease Implementation Group (RDIG)

Michelle Conway | April 2022
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Event

Rebecca Pender explains the challenges of caring for a child living with a rare conditions and the impact of sub-optimal care coordination.

Rebecca Pender April 22
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News

Simon Mouncer Joins RDNN as Finance Director

Simon Mouncer
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News

Rare Disease Health Policy in the US

Cassandra Smith BSN, RN
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Event

Helena Baker the Interim CEO of RDNN discusses her experience of living with a rare condition in this podcast from Medics 4 Rare Diseases.

Helena Baker
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Event

Here from Trudy Morgan and Helen Wilde from Glut1 Deficiency UK about the role of the charity in supporting their members with care coordination

14th March 2022
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Event

Kay Parkinson, Founder of RDNN speaks to Frontline Genomics

Kay Parkinson
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Event

What did the CONCORD study tell us about the care coordination needs of people living with a rare condition

7th March 2022
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Event

Developing a Care Coordination Service for Rare Conditions

February 2022
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News

RDNN support Rare Disease Day 2022

Rare Disease Day 2022 | 28th February
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News

RDNN invited to present at the 16th Orphan Drugs & Rare Diseases Global Congress 2022 Europe

Helena Baker | 17th February 2022
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News

RDNN support Genetic Alliance UK with a Survey on Care Coordination in Wales

Responses Required by 16th November
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News

Having a rare disease is difficult – gaining access to good coordinated care shouldn’t be!

Michelle Conway
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Event

Inaugural RDNN Webinar

Liz Morris, Lead Specialist Nurse in Lysosomal Storage Disorders
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Event

Rare Disease Webinar “Connecting the Dots in Rare Disease Service Provision”

Neil Dugdale | February 2021
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