Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March

 

Rare Disease Day is coming !  This year, we are looking forward to welcoming you to the fourth Joint North South Rare Disease Day event, held with our friends the Irish Rare Disease Taskforce, on 5 March 2018 in the splendid surroundings of QUB’s Riddel Hall, Stranmillis Road, Belfast.

The Theme for this year’s Rare Disease Day is Research; and the Joint North South Conference will focus on:

  • Rare Disease and the UK and R.o.I Strategies
  • Expert Patients: Engaging with Research: EUPATI UK and RoI
  • Patients and Researchers: examples of good practice
  • Beyond the 2016 to 2020 Strategies: Next Steps

We are still working on the Programme, so watch out for updates!

Register now (FREE)  here

 


 

 

 

 

Living Life with Rare Disease: Taking the scare out of Palliative Care

It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”.

Palliative care is all about making the very best of life, from diagnosis on; and even when you have no diagnosis.  It’s about how to ensure the support that’s needed to live life to the full, in difficult circumstances.

We have a terrific line up of speakers, so this is a great opportunity to hear and learn about how a palliative care approach can support and improve quality of life, from diagnosis onwards or even if you have no diagnosis.  It’s a chance to have your say about how palliative care can be developed, for all those living or working with rare diseases.
A chance to meet up, make new friends and contacts, and share your knowledge and experience!

Register here:

Outline Programme:
9.30-10.00 REGISTRATION: Tea/Coffee; Scones
10.00 TO 13.45 PALLIATIVE CARE AND RARE DISEASE PROGRAMME:
10.00-10.35 Welcome: NIRDP Representative
10.35-10.45 A Patient/Carer’s Perspective: Sandra Campbell, NIRDP
10.45-11.05 Dr Aine Abbott, RCGP (NI): Supporting Communication: the Patient Passport
11.05-11.25 Dr Damien McMullan, Consultant, Adult Palliative Care
11.25- 11.45 Dr Heather McCluggage, Associate Specialist, Children’s Palliative Care
11.45-12.05. Katie Rigg, Nurse Specialist, Multiple Systems Atrophy Association
12.05-12.25 Donall Henderson, Chief Executive, Foyle Hospice
12.25-12.45 Paddie Blaney, Director, AIIHPC :
12.45- 13.45 Discussion Session: What needs to be done to improve support for rare disease?

LUNCH AND NETWORKING: 13.45 to 14.30
To include Soup, Sandwiches, and meeting and getting to know others.

If you want to join us just for the lunch and networking, please email events@nirdp.org.uk; and we will try to facilitate this; but we would encourage you to come and hear about how a palliative care approach can help make the most of living every day with a rare disease.

What’s On: Coming Events..

Just to keep you all informed- here are two of the rare disease related events which are coming up this month!

  1. The second All Ireland Neuromuscular Research and Information Sharing Day is being held in Riddell Hall, Belfast, on 16th May 2015. This event is co-hosted by Muscular Dystrophy UK and Muscular Dystrophy Ireland with registration starting at 9.30 am.
  • Prof Francesco Muntoni will be discussing their clinical centre of excellence and translational research for the benefit of patients, including briefly updating on muscle disease genes and measures for trial readiness.
  • Dr Ros Quinlivan is focusing on their new neuromuscular complex care centre (e.g. http://tinyurl.com/kx54rac) and transition.
  • Prof Eileen Treacy from Dublin is providing an update from their National Clinical Programme for Rare Diseases, and Aoife Bradley, from the Northern Ireland Regional Medical Genetics Service will be discussing pre-implantation genetic diagnosis.
  • Afternoon workshops will take place on Disability Sports and Independent Living, finishing the day with a LEGO fundraising event.
  • A parallel, medically-focused discussion session supported by the NIRDP is available with our international experts as requested 2.00 pm – 3.30 pm.

Everyone is very welcome to attend all or part of the day; so please spread the word, and please do register to accommodate catering.

For further information and to register for attendance please contact Demelza at d.stuart@musculardystrophyuk.org

2. Vasculitis Ireland Awareness have organised the first Vasculitis Conference in Northern Ireland, on “Managing Vasculitis” in the Burrendale Hotel, Country Club and Spa, Newcastle, Co. Down BT33OJY, on Sunday 24th May 2015, 9am-5pm.  

Topics discussed will include:

  • Vasculitis- the Basics: Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin;
  • How we can help ourselves: Self help and Symptom Management groups available in NI: Tricia Bowers, Arthritis Care
  • How to get the most from our appointments: Kieran Brogan, Patient Advocate
  • Pain Management: Patricia Mc Crystal, Chartered Counselling Psychologist- Specialist in Persistent Pain, Southern  Health and Social Care Trust
  • Renal Patient View and the Importance of Registries: Dr Damian Fogarty, Consultant Nephrologist Belfast Health and Social Care Trust with special interest in research; and
  • How to improve our Health and Well Being: Dr Caroline Harper, Executive Medical Director/ Director of Public Health, Public Health Agency NI

The cost is £27.50 per person, including  lunch and refreshments.

There will  be information stands on how to access help, benefits, aids and appliances, and information on courses available to help maintain and regain independence.

This event will be of interest to anyone interested in improving management of a long-term chronic condition.

Register online at https://managingvasculitis.eventbrite.co.uk

For more details contact Julie at 02844 842889

 

Watch this space for details on the forthcoming Ataxia UK Conference (Radisson Blu Hotel, Gasworks, Belfast; 20 and 21 June 2015); and on NIRDP’s own forthcoming events…

 

 

 

 

Collagen – Why Do We Need It?

With support from the Research and Development Division of the Public Health Agency, and in collaboration with the Regional Medical Genetics Service and QUAMS, we are bringing  two external, internationally recognised experts on Connective Tissue disorders and translational genomic medicine, to join with our local experts in a “mini Symposium”, chaired by Professor Patrick Morrison, on connective tissue disorders.

The expert speakers are:

Professor Dianna M. Milewicz, M.D., Ph.D. 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 The University of Texas Health Science Center at Houston, TX

Professor William Newman, MA FRCP PhD Professor of Translational Genomic Medicine Manchester Centre for Genomic Medicine St Mary’s Hospital Manchester

Dr V McConnell, MD, MRCGP, DRCOG, PGCCE, Clinical Lead, Regional Medical Genetics Service, Belfast Health and Social Care Trust

Dr A Pendleton, FRCP (Ed), FRCP (I), FBASM, Consultant Rheumatologist,  Belfast Health and Social Care Trust

Our aim is to raise awareness of collagen disorders, and provide information on how to understand the diagnosis, and the appropriate treatment and management of these conditions, which from the relatively mild to the life threatening.

The event will provide a focus for patients and carers to improve their knowledge and understanding, and enable them to participate from an informed basis in their care, and in appropriate self-management strategies.

It will add to the knowledge base of clinicians and other health professionals and scientists by providing a world class up to date information and evidence session: and it will enable medical students to learn from internationally renowned experts not normally available in Northern Ireland.

CPD accreditation (2 external clinical CPD Points from the Royal College of Physicians) has been obtained for the event: Registration is required for Certification.

Please Click Here to Register Now!

Where?
Lecture Theatre, Medical Biology Centre, Queen’s University Belfast, Lisburn Road, Belfast

When?
18.00 to 21.00, 24 March 2015

Changing attitudes and behaviour towards people with a disability

CONFERENCE: DELIVERING SOCIAL CHANGE

 

CHANGING ATTITUDES AND BEHAVIOUR TOWARDS PEOPLE WITH A DISABILITY

DATE: THURSDAY 2ND MAY 2013, TIME: 9.30AM – 4.15PM

VENUE: RIDDEL HALL, QUEENS UNIVERSITY, STRANMILLIS, BELFAST

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To register for the conference please click on the link below to access the registration form.

https://www.surveymonkey.com/s/Disability_Conference_Registration

Closing date for registration 24 April 2013.

Conference – Institute for Public Health

On 11 October the Institute for Public Health are hosting a free conference in Belfast.

IPH is hosting a dynamic, informal, Public Health Open Conference to provide a platform for people from all sectors (statutory, academia, community and voluntary etc), North and South, to present on an area of interest to the wider public health audience.

The programme will be suggested and developed by you, the participants, through online registration and this approach gives you the opportunity to present on one of six broad areas of priority in public health. All communication will be facilitated through a website.

This event is free of charge but registration is essential.

Register if interested!