Contact’s team in Northern Ireland continues rare conditions campaign with second conference

3 mins read

Monday 3 June 2024

Tags: rare conditions confernece, Contact Northern Ireland

Last month around 65 parent carers and practitioners attended Contact NI’s second rare conditions conference, Supporting Children and Families Living with Rare Diseases in Northern Ireland.

Held in collaboration with the Northern Ireland Rare Disease Partnership and supported by the Pears Foundation and Dormant Accounts Funding NI, May’s conference built on the momentum of Contact NI’s rare conditions conference which took place in January to provide another opportunity for parents and practitioners to connect, exchange information, and learn from each other.

Contact’s Northern Ireland Trustee, Kate Fleck, opened the conference and attendees heard some of the key insights and findings that came out of January’s conference which included the challenges parent carers have getting information and support for their child.

“It is a real help to know that Contact is focused on our needs. Too many times we feel as parent carers that we are on the defensive, always battling. Today was a piece of respite for me.” 

Parent carer who attended Contact’s NI Rare Conditions Conference

A panel discussion also took place, featuring expert insights from a paediatric specialist, solicitor, and other healthcare professionals, who addressed some of the critical issues faced by rare conditions families and provided a space for in-depth discussion and Q&As.

Attendees had the opportunity to try out our workshops for practitioners and parent carers which offer practical tools and strategies for managing rare conditions and improving communication between carers and the professionals they come into contact with.

“I felt emotional during the wellbeing workshop…I think it was the first time in a long time that I actually realised how much trauma I’ve been holding since our daughter’s diagnosis.” 

Parent carer

Catherine Murnin from Contact’s Business Development team said: “Our conference created a supportive environment for sharing experiences, learning, and developing meaningful connections – and we were delighted to receive such positive feedback from attendees.

“It was a great opportunity for families to share their experiences and highlight some of the unique challenges they face like having to explain their child’s condition to different professionals over and over again for example. This conference has given us even more valuable insight as we continue to advocate for better resources and support for families affected by rare conditions and ensure that parent carer voices are heard and listened to.”

Other organisations attending the conference included the NHSCT Carers Hub, C&YPSP Department of Health, NICHI Health Alliance, SENSE NI and Children in Northern Ireland (CINI).

Find out more about Contact in Northern Ireland.