Minister Simon Hamilton today announced a £3.3m investment into the creation of an innovative Northern Ireland Genomics Medicine Centre (NIGMC); and formally launched the Northern Ireland Rare Disease Implementation Plan: wonderful news for patients, carers, and clinicians living and working with rare disease!
Minister Hamilton said:
“The Plan embodies my commitment to implement the UK Rare Diseases Strategy in Northern Ireland. It provides a holistic approach to caring for people with a rare disease and to maximise the available resources for research, innovation and collaboration across the UK to benefit the entire rare disease community. The Plan also provides the opportunity to work with the Republic of Ireland to realise the mutual benefits of cross border collaboration on rare diseases.”
For everyone living and working with rare disease, this commitment by the Minister brings hope, and an opportunity to participate in building a better future for all families living with a rare disease. It’s a superb new resource for the clinicians working to give their patients a diagnosis and improve understanding of their conditions. It gives a clear framework and impetus for work on creating new pathways for treatment and management.
We’ve worked together (patients, families, elected reps, clinicians, managers, officials) to get the UK Strategy; the NI Plan; and the Genomic Medicine Centre. We will keep working together, to reap the full benefits and provide better opportunities for all our young people and families into the future.
NIRDP’s Newry Mourne and South Down Group will meet this Thursday, 24 September, from 7pm to 9pm in the Mourne Country Hotel.
The Guest Speaker will be Geraldine Maguire, Assistant Director from the Southern Trust; and we hope that it will be an informative and constructive meeting..we are stronger together!
Please contact Fionnuala, (e mail: email@example.com) for details..
The Programme of Rare Disease and Research mini Seminars, bringing internationally recognised experts and senior NI Clinicians together to improve practice, kicks off on 17 September at 5.30 pm in the Postgraduate Medical Lecture Theatre at Belfast City Hospital, Lisburn Road, Belfast, BT9 7AB.
Errol Walsh from HDANI, whose step daughter Rachel suffered from HD, will give the family perspective; and Prof. Jane Paulsen, from the University of Iowa, will give the keynote address on what her research has shown about understanding the behavioural changes in HD, and how best to manage these.
Dr Seamus Kearney, Consultant Neurologist at the Belfast Trust, will be setting the Northern Ireland scene, and Sorcha McGuinness, Executive Director of HDANI, will set out the Patient Organisation contribution, leading to a Panel discussion about how research findings on HD can be used to change clinical and social care practice, improving outcomes for all those affected by HD.
There’s a food and drink reception at 5.30; so please use the link below to Register – including giving any dietary or access requirements – so that we can make sure everyone is catered for!
Fionnuala and Kerrie, two of NIRDP’s Members, were on Radio Q 100.5 South East this morning, talking to Tom Kelly about rare diseases and about the need for better information and support. We are reaching out to people in the Newry, Mourne and South Down area- the new Forum will be meeting in September, so spread the word, and get in touch now at firstname.lastname@example.org for details.. Thank you, Q Radio, http://www.qradionetwork.com/q-south-east/ and well done, Fionnuala and Kerrie!