February 2022

Developing a Care Coordination Service for Rare Conditions

Care Coordination for people living with a rare condition is challenging at best and for many feels like an uphill struggle every day. To mark #rarediseaseday22 RDNN are speaking to stakeholders from across the rare disease community to understand how care coordination can be batter and how RDNN can help.

In this interview, Helena Baker Interim CEO of RDNN and Michelle Conway, Policy Advisor for RDNN speak to Natalie Frankish, the Policy and Engagement Manager from Genetic Alliance UK about her work on improving care coordination in Scotland. This discussion highlights the importance of care coordination but also many of the challenges in trying to embed services into policy and the difficulties of developing new services for rare conditions.

You can watch the full interview here

News

RDNN Achieves Charitable Status

Press Release| August 2022
Find out more
News

RCN are attending the RCN Congress in Glasgow

6th-8th June 2022
Find out more
News

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

Michelle Conway | April 2022
Find out more