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The Northern Ireland Rare Diseases Partnership (NIRDP) hosted a Research Symposium

The Northern Ireland Rare Diseases Partnership (NIRDP) hosted a Research Symposium in Medical Biology Centre, Queens University Belfast on 24 March 2015.

There were 5 expert speakers including the key note speaker - Professor Dianna Milewicz, President George H.W Bush Chair of Cardiovascular Medicine Director of the Division of Medical Genetics, Professor and Vice-Chair of the department of Internal Medicine, University of Texas Health Science Centre at Houston, Texas whose presentation included the genetic basis of thoracic aortic aneurysms and dissections: implications for gene-based management.

Professor Bill Newman, Professor of Translational Genomic Medicine Manchester Centre for Genomic Medicine St Mary’s Hosptial Manchester discussed transforming cardiac genetics through next generation sequencing.

Dr Vivienne McConnell, Clinical Lead, Regional Medical Genetics Service, Belfast Health and Social Care Trust gave an overview of Ehlers Danlos syndrome.

Dr Adrian Pendleton, Consultant Rheumatologist, Belfast Health and Social Care Trust spoke on rheumatology aspects in Ehlers Danlos Syndrome.

Mr Jamie O’Brien, patient living with Ehlers Danlos Syndrome gave the audience insight into his experiences of the syndrome.

Addressing the event, Health Minister Jim Wells said: “Sharing of expertise and best practice is one of the key elements of the Draft Northern Ireland Implementation plan for rare diseases. The draft plan seeks to set out the commitment of my department, the health and social care sector, the voluntary sector, and education and research stakeholders to address the needs of people living with the impact of a rare disease regardless of their age, where they live and whatever their circumstances. I am proud that, in a short space of time, Northern Ireland has progressed quite a distance towards having an excellent research and innovation system for healthcare. The strategic allocation of our regional health and social care R&D fund is enabling health trusts to develop research ideas and, through clinical trials and other studies, to generate evidence of the relative effectiveness of new medicines, diagnostics, medical devices or other treatments. In the years ahead we look forward to building on the strengths of our healthcare sector with all players; statutory bodies; the voluntary sector, academics, researchers, industry and service providers, working together to deliver the best possible healthcare for our people and maximising the opportunities for our economy.” 

Christine Collins, Chair of the Northern Ireland Rare Disease Partnership, said: “This world class event shows how Northern Ireland’s experts, like Dr Vivienne McConnell, Clinical Lead at the Regional Medical Genetics Service in Belfast, are part of a worldwide network of experts in rare and genetic conditions."

Prof Dianna M Milewicz, vice-chair of the department of internal medicine at the University of Texas Health Sciences Center, Houston Texas 

 

The Northern Ireland Rare Disease Partnership (NIRDP) welcomed Health minister Jim Wells and several world-class experts on hereditary connective tissue disorders (HDCT) at a mini-symposium at Queen’s University, Belfast earlier this week.

Pictured, from left, are NI health minister Jim Wells, BHSCT geneticist Professor Patrick Morrison, Dr Vivienne McConnell, Northern Ireland’s expert in HDCT and  clinical lead in genetic medicine at the Regional Medical Genetics Service, Belfast Health and Social Care Trust, Christine Collins, chair of NIRDP, Dr Adrian Pendleton, consultant rheumatoloist, BHSCT, Dr Ruth Carroll, programme manager, HSC research and development division, PHA, keynote speaker Prof Dianna M Milewicz, professor and vice-chair of the department of internal medicine at the University of Texas Health Sciences Center, Houston Texas and Professor William Newman, from the Manchester Centre for Genomic Medicine, St Mary's Hospital, Manchester

 

Twitter link to Northern Ireland Rare Disease Partnership - @NI_RDP

 

This event was supported by HSC R&D Division.