Latest News

Find out more about RDNN activities and upcoming events.

News

A catch up with Cuttsy+Cuttsy

Cuttsy+Cuttsy
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News

The Association of Genetic Nurses and Councellors want to hear from You!

AGNC | Survey | Deadline 30th September 2022
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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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If you would like to learn more about RDNN or find out how you can get involved please contact: kay.parkinson@rdnn.org
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