Ataxia

Rare Disease “Research into Practice” Series
Ataxia: Translating Research into Practice
17 February 2017
Grosvenor Hall, Glengall Street, Belfast BT12 5AD

NIRDP has joined forces with Ataxia UK and with the support of the Public Health Agency’s Research and Development Division is bringing international experts in Ataxia together at a training Conference in the Grosvenor Hall, Belfast on 17 February.

The conference will be of relevance and interest to anyone living or working with Ataxia and other movement disorders; and to those interested in the hearing difficulties associated with Ataxia. Don’t miss this opportunity to hear from world leading clinicians on recent developments in the diagnosis and management of Ataxia; and from patients and carers on the experience of living with Ataxia.

Register now at the link below!

The event has been approved by the Federation of Royal Colleges of Physicians of the UK for 5 Category 1 (external) CPD Points.

9.00 Registration & Coffee
9.30 Welcome Christine Collins, Northern Ireland Rare Disease Partnership
9.35 Living with ataxia Clodagh Clerkin, Ataxia Ireland
9.45 Types of ataxia and their clinical care pathways Dr Petya Bogdanova-Mihaylova, Registrar, Tallaght Hospital, Dublin
10.15 The patient experience of diagnosis Alex Duncan, Ataxia UK
10.25 Diagnosis of inherited ataxias: recent developments in genetics research Professor Patrick Morrison, Consultant in clinical genetics, Belfast NHS Trust
11.00 Break
11.20 How to reach a diagnosis in the ataxias: a clinical perspective Professor Marios Hadjivassilliou, Professor of Neurology Sheffield Teaching Hospitals NHS Foundation Trust
12.05 Experiences of ataxia patients in Northern Ireland – results of a survey undertaken by Ataxia UK Sue Millman, CEO Ataxia UK
12.30 Speech therapy interventions in ataxia Professor Anja Lowit, Professor of Speech and Language Therapy, Strathclyde University
13.00 Lunch
14:15 Overview of Ataxia Medical Guidelines Dr Julie Greenfield, Head of Research, Ataxia UK
14:25 Hearing difficulties in people with ataxia and the use of FM hearing devices Dr Kai Uus, Reader in audiology, Manchester University
14:55 Ataxia Research: Latest developments in clinical studies Dr Julie Greenfield, Head of Research, Ataxia UK
15:25 Any remaining questions and closing remarks Sue Millman, CEO Ataxia UK
15.40 Close

DHSSPS Consultation – your input is needed!

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Following publication of the UK Strategy for Rare Diseases in November 2013, all four UK countries agreed to develop an implementation plan or high level strategies, relevant to their respective jurisdiction, to deliver the 51 commitments by 2020. This strategy aims to ensure that people living with a rare disease have access to the best care and treatment that health and social services and relevant partners can provide.

The Department of Health, Social Services and Public Safety (DHSSPS) published a Statement of Intent in June 2014 which set out the Department’s approach to delivering the 51 commitments in Northern Ireland.

DHSSPS in association with members of the NI Rare Diseases Stakeholder Group (NIRDSG) have now developed the draft Northern Ireland Rare Diseases Implementation Plan. It sets out in detail how the Department proposes to deliver the 51 commitments, in partnership with the wider Health and Social Care system in Northern Ireland.

NIRDP wants to hear from you. Please send your comments / responses to info@nirdp.org.uk

For further details see http://www.dhsspsni.gov.uk/showconsultations?txtid=74325.

Autumn Partnership Meeting – Big News

More news on our Autumn Partnership Meeting, to be held from 10.45 to 12.30 (immediately after our AGM) in the Castleview Suite in the Pavilion at Stormont, on 27th October.

Jim Wells, MLA, Minister for Health, who will be the main speaker, will be making an important announcement about the long awaited Northern Ireland Rare Disease Implementation Plan.

Alastair Kent OBE, the Chair of the UK Rare Disease Forum, will update us on progress in England, Scotland and Wales; and Philip Watt, Chair of the Irish rare Disease Taskforce, will describe what is happening in the south.

There will be an opportunity to meet the Minister, and key officials; ask questions; and think about the key issues we need to tackle in making sure that the Vision of the UK Rare Disease Strategy – that no one is left behind just because their condition is rare – is realised in Northern Ireland.
All MLA’s and MP’s have been invited, so make sure you contact your MLA’s and MP to encourage them to come along, and show their support for this important step forward in getting rare diseases taken seriously in Northern Ireland!

Palliative Care Week 6-11th October

Next week is Palliative Care Week.

Organised by The Palliative Hub, this event is the first-ever all island Palliative Care Week takes place from October 6-11.

It is being coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) and they want to encourage serious but positive conversations. They aim to raise a deeper public understanding of palliative care regarding when it can be used, who it is for and what its benefits are.

For further information see www.palliativecareweek.com

NIRDP AGM and Autumn Partnership Meeting

Save the date!

27th October, 1000 – 1230pm Stormont Pavilion, Belfast

We are planning for our NIRDP AGM and Autumn Partnership Meeting.

Come along to hear about the progress the NIRDP has made and to plan our next steps.

Come along to hear what’s happening on The Rare Disease Strategy and on other developments in health and social care!

Partnership Meeting – 17th June

A date for your diary: we will be holding a Partnership Meeting from 11.00 to 14.00 on 17th June 2014, in the Ulster Hall, 34 Bedford St, Belfast, County Antrim BT2 7FF.

Register below.

This is an opportunity to meet up again, and to hear first hand about:

  • Plans for Belfast’s first Disability Pride Day (20th September 2014) What’s it all about? How can we get involved? How can we make this a day for us all to be proud of?
  • Where are we on developing the Northern Ireland Rare Disease Implementation Plan?
  • What’s happening on getting tangible actions underway around improving rare disease care?
  • Raising Awareness of Rare Disease – what should we do next?

We are also working on how best to respond to the Draft Rare Disease Implementation Plan, when it is published, we think at the end of June, for a 12 week consultation.

Most importantly, we need to do all we can to ensure that actually implementing the Rare Disease Plan is a Ministerial Priority. So we need to make sure that all our elected representatives know how important rare diseases are; how much impact they have on people’s lives; and how much improvement could be made through implementing the Plan. Everyone can be involved in this, through talking or writing to your new Councillors; your MLA’s; your local papers about the Plan; or just by spreading the word through family and friends.

RDD 2014 Conference

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The second Joint North South Rare Disease Day Conference is taking place on 28th February in Riddel Hall, Belfast. This Conference will bring together policy makers, clinicians, service managers and families and people living with rare disease, to look at what is happening and to see how things can be improved in the future. Click here for the agenda for the day.

Register to attend the Conference

If you need financial assistance to help you to attend, from the Republic of Ireland contact Marie Downes (mdownes@mrcg.ie) and from Northern Ireland contact Cathy McKillop (cathy.mckillop@shinecharity.org.uk)

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There are Poster Competitions for children (up to the age of 18) and for medical/technical issues in the field of rare disease.