Unique Role Supports Families Affected by Rare Disease

The Steve Morgan Foundation marked the fourth anniversary celebrations of the Same but Different charity by handing over a three-year grant of £74,000 to support families affected by rare disease in North Wales.

The funding, handed over at the celebratory party and launch of an exhibition, will be used to support a unique new role for the charity.

Same but Different which was launched four years ago to raise awareness of the impact rare disease has on individuals and their families, will support families by working closely with medical professionals, colleagues across North Wales and other community groups through their new Rare Navigator service.  

This unique role is the first of its kind in the UK and will ensure that families affected by rare disease, of any type, can now access support.

David Hanson, MP for Delyn, welcomed guests to the event and said:  “It was a pleasure to join Same but Different for their fourth birthday celebration. 

“The work they do to raise awareness of some of the most difficult issues should be highly commended.  

“The donation from the Steve Morgan Foundation is a fantastic boost for their work on both a local and national basis. 

“I look forward to continuing to work with Same but Different.

“They are a local charity that harness Flintshire values and combine them with dedication and hope to ensure a supportive voice is delivered.”

Founder of Same but Different, Ceridwen Hughes from Mold, explained how the organisation had been on a journey over the last four years,  changing its focus from raising awareness to also providing support.  

She explained: “As a parent of a child affected by rare disease, I understand the isolation that many families feel on getting a diagnosis for their child or relative.  

“Our new Rare Navigator service will help families from the moment of diagnosis onwards. 

“Only 50% of rare diseases have a support group and we will ensure we are there for people no matter what their condition.  

“We will also work with support organisations to help them by being a local contact in North Wales. 

“This service is possible through the wonderful support of the Steve Morgan Foundation to whom we are very grateful.”

Gosia McKane, Developments and Project Manager at Steve Morgan Foundation, attended the party and presented the organisation with a cheque. 

“The Steve Morgan Foundation works with many organisations across our region which are working to improve conditions for people affected by disability and we are delighted to be supporting Same but Different with this new initiative,” said Gosia.

“We’ll be sharing our network and contacts with the service to ensure that they can deliver the best possible support for families who invariably find themselves isolated and anxious.” 

To view online exhibitions by Same but Different or for more information about the support that can be provided, visit their website at www.samebutdifferentcic.org.uk.

More news