Press Release: Rare Disease Nurse Network (RDNN) announces registration as a charity with the UK Charity Commission

London, UK – July 2022:

The RDNN Board of Trustees and Management is delighted to announce the recent registration of RDNN as a registered UK charity. This is an important milestone as they strive forward on their mission to provide a network of specialist nurse support for every person with a rare disease.

RDNN has also shared the news that Michelle Conway has been appointed as their new Interim CEO. She will replace Helena Baker, who has recently stepped down.

RDNN will shortly be announcing how to help them with fund-raising and growing their network and capabilities.

The press release is fully available for reading here.

About RDNN:

RDNN was founded in 2016, when a small number of people came together on the invitation of Kay Parkinson. Ms. Parkinson’s vision was to set up an organisation to provide specialist nursing support for all those affected by a rare disease in the UK.

To learn more about the RDNN, please visit

IRDiRC member Western Australian Department of Health is proud to support this initiative. Sue Baker, who is the nurse co-directing the Rare Care Centre at Perth Children’s Hospital, is leading the charge on this from the Australian point of view.