Join the European Cancer Patient Coalition (ECPC) in making personalised care more of a reality across Europe!
This November, join @cancereu advocating for greater access to molecular testing in Europe. Just one test could change a patient’s treatment plan & help us in #CrackingTheCancerCode.
The ECPC has kicked-off their first ever Personalised Medicine Awareness Month 2018!
The European Cancer Patient Coalition calls on everyone to unite this November and promote the importance of awareness and access to cancer molecular testing in all European countries!
Join the ECPC today and show your support by downloading the Campaign Action Toolkit. It contains key messages, social media materials, a press release, outreach letter to policymakers and much more – to help patient organisations raise awareness and gather commitment at a national level.
To find out more about the campaign click here.
As part of our NIRDP “training” work, we are holding a Workshop for those who are Trustees/Governors/Directors of Charities and voluntary organisations; or who are thinking of taking up the role.
The Workshop will cover:
- “Our Governance Role”, led by Eileen Mullan of Strictly Boardroom ; and
- An overview of GDPR, delivered by NICVA
This is a great opportunity to learn more about how Boards work; and what is needed from Board Members to make their organisations work effectively, as well as to learn about how to manage information , under the new GDPR rules. It will be fun and very informative; and it’s FREE!
Places are limited, so if you would like to come, please email: email@example.com by Wednesday 31 October
Sense Northern Ireland supports children with vision and/or hearing loss and those with multiple and complex needs.
As part of their Touching Lives Project, supported by Big Lottery, we are holding a training and information day with Gail Deuce for professionals on Friday 12th October in Girdwood Community Hub, Belfast and a family day on Saturday 13th October. This project is primarily aimed at families with children aged 0-12.
CHARGE Syndrome is a rare genetic condition and a leading cause of hearing and vision loss and multi-sensory impairment. The charity are aware of a number of families with very young children recently diagnosed with CHARGE Syndrome in Northern Ireland, and it is likely there are others not known to the charity. Most children with CHARGE Syndrome have complex and ongoing medical and sensory needs, we hope you will be able to forward this to your colleagues and to families you may know of who might be interested.
There is no cost to professionals or families but places are limited. To find out more about the agenda for professionals, click on the link: Charge Flyer professionals, or for the agenda for families, click here: Charge Flyer parents
If you would like any further information or are interested in attending please get in touch with Liz Gorman, Family Support Worker, on Liz.Gorman@sense.org.uk or call mb: O7799660006
Huntington’s Disease Association Northern Ireland & Huntington’s Disease Association of Ireland
Invite you to their Joint Inaugural Conference
Friday 28th September
Canal Court Hotel, Newry, BT35 8HF
12- 1pm Registration and light lunch/refreshments served
1-1.30pm Welcome – Sorcha McPhillips, HDANI & HSC speaker – launch of E-learning resource
1.30-1.45pm Patricia Towey, HDAI brief intro on HDAI and speaker intros
1.45-2.15pm Lauren Byrne, University College London, HD Department
2.15-2.45pm Professor Asa Petersén, Lund University, HD Center
2.45-3.15pm Aoife Gallaher, Bloomfield Hospital, Dublin
3.30-3.45pm Comfort break tea/coffee
3.45-5.30pm Interactive workshop on HD management led by HDANI with input from carers and professionals
5.30pm Closing remarks, photos, certificates
This is a not for profit event with a fee of £20/€22 which includes lunch and materials
Payment can be made on the day or invoiced as appropriate
If you have any questions about the conference or would like to register
email firstname.lastname@example.org or call/text 079 8284 3907
email email@example.com or call 01 872 1303
Involving the Public in the Design and Conduct of Research:
Building Research Partnerships
A workshop for Researchers & Members of the Public
11th October 2018, 9:30 am – 4pm, Ulster University Jordanstown
This free workshop will look at practical ways to involve patients and the public as partners (PPI) in the research process. It will explore the issues related to becoming and being a member of the public involved in research and the role of researchers in facilitating this involvement.
The workshop is aimed at patients, carers and members of the public who are interested in getting involved in research and researchers interested in involving patients, carers and the public in their research.
Why should I attend?
- As a patient, carer or member of the public, you will gain an understanding of what it means to be involved in research at each stage of the research process.
- As a researcher, you will gain an understanding of how patients, carers and the public can get involved in research, practical tips, the opportunity to share your research expertise and build research partnerships.
To register your interest for this workshop please contact: firstname.lastname@example.org or Tel: 028 9536 3399 by 1st October 2018.
Places will only be confirmed after the closing date.
The EURORDIS Winter School on Scientific Innovation and Translational Research consists of one week face-to-face training held in Paris in March.
The next on-site training will take place on 11-15 March 2019 at the Imagine Institute in Paris. Apply now to take part in a week of face-to-face training, applications close 15 September.
Applicants will be notified of the outcome of their application by mid October.
For more information or to register your interest log on to https://openacademy.eurordis.org/winterschool/
The Public Health Agency Research and Development division is pleased to announce the next ‘Involving the Public in the Design and Conduct of Research: Building Research Partnerships’ workshop will take place in Ulster University Jordanstown on 11 October 2018 from 9.30am until 4.00pm.
The workshop is free and open to patients, carers and the public interested in becoming involved in research and to researchers who are interested in involving patients, carers and the public in their research.
For more details and to register your interest to attend please click here.
Swallowing Difficulties (Dysphagia) Regional Service User and Carer Engagement Event Thursday 16th August 12:30pm—3:30pm
Seagoe Parish Centre, Portadown
Lunch available on arrival
The Public Health Agency is leading on work across Northern Ireland to help improve safety and quality of life for adults with swallowing difficulties.
They are keen to hear the views of those living with or affected by the condition so if you have swallowing difficulties or if you care for someone who does, your attendance and input at this event would be extremely valued.
The Public Health Agency is particularly keen to engage with service users and carers with experience of dysphagia, including users and/or carers from the key areas below:
- Adult Learning Disability
- Mental Health
- Carers of people with dementia or the person with dementia if they are able to attend
- Those with experience in an acute setting
- Those in receipt of domiciliary care
- Those with palliative care needs
- Private Nursing homes
- Residential homes
If you wish to attend or would like to discuss in more detail, please contact Martin McCrory, Project Lead, at email@example.com by Friday 10th August
Information, Education, and Social Media Resources for Rare Disease:
Are you part of a collaborative group working in the area of rare diseases in Northern Ireland?
Queen’s University would welcome the opportunity to interview you (via telephone or in person) to evaluate awareness of rare diseases and the related information and educational resources available for patients, their families and healthcare professionals.
We are hoping to improve rare disease resources in Northern Ireland and would appreciate your help so that we can identify important priorities for local development. This may be creating new information or signposting local individuals to excellent resources that exist elsewhere.
We would love to hear from you. If you are interested in knowing more please contact Julie McMullan via email at firstname.lastname@example.org
Thank you for considering being part of this important research!