Are you a GP? If so, the Queen’s University Rare Disease team want your view on rare diseases in NI.
The aim of the survey is to gain an understanding of GPs’ perceptions and experiences of rare diseases. We are working in partnership with Queens University Rare Disease team to explore service user (individuals living with a rare disease(s)) perspectives of the GP-patient partnerships.
It is hoped that increasing awareness around this issue will in turn improve the care provided for those living with a rare condition.
Please access this short survey using the following link: https://tinyurl.com/GPSurvey19 which will take approximately 15 minutes to complete.
Queens University Belfast are doing a survey of complementary and alternative medicines for rare diseases in NI and would love to hear from people living with rare diseases, carers, family members and health-care professionals.
This survey is designed to improve understanding of what complementary and alternative medicines (CAMs) are currently used by rare disease patients in Northern Ireland and how effective people have found these therapies to be. This survey should take about 15 minutes to complete.
Results from the survey will be anonymously collated and used to raise awareness of the potential advantages and disadvantages of CAMs for individuals with rare disease(s). Ultimately, it is hoped that this will help patients, carers and healthcare professionals to make more informed decisions when considering CAMs for symptom management or treatment of a rare disease.
Find out more / participate at https://www.smartsurvey.co.uk/s/CAM2019
For anyone interested in the upcoming conference by Tuberous Sclerosis Association, please find details of the event below.
This event is free of charge and anyone interested in attending can download the booking form, Tuberous Sclerosis Patient Conference booking form, and email directly to Claire Kirk at Claire.email@example.com
Date: Fri 25th Jan 2019
Venue: Post-graduate Centre, Belfast City Hospital
09.15 Registration & coffee
10.00 Chair: Prof Patrick Morrison
10.00 Overview of TSC: Rachel Hardy (Belfast Trust)
10.15 Patient perspective
10.30 Introduction to TSC- Associated Neuropsychiatric Disorders (TAND): Prof Petrus de Vries (University of Cape Town, South Africa)
11.55 Local Support for Autism: Shirelle Stewart (The National Autistic Society)
12.15 Emotional Regulation tools for young people with autism: Rachel Ferguson (Middletown centre for autism)
12.45 Patient perspective
14.00 Chair: Dr Deirdre Donnelly
14.00 Patient perspective
14.15 Managing TAND: current treatments & future research:
Prof Petrus de Vries (South Africa)
15.45 Getting the right support in School for children with Special Educational Needs: Fiona O’Donnell – SENAC (The Special Educational Needs Advice Centre)
16.15 Louise Fish – TSA (Tuberous Sclerosis Association) – conclusion of meeting
16.30 Panel Discussion
17.00 Close of meeting
To all those who attended the “What Works” event that ran by The Community Development and Health Network (CDHN) this summer, a copy of the report is now available to download via the link:
What works summary sept18, or via the CDHN website, www.cdhn.org.
Please feel free to share through your own networks.
The CDHN would like to pass on their thanks to all who took part in these events; hopefully you found them useful, to those who were unable to attend, the report provides a useful summary of the day.
If you would like to discuss the report, or any of their other work, please contact Joanne Morgan on 028302 64606 or email: firstname.lastname@example.org.
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.
Dr Anne Kilgallen, Chief Executive, Western Health and Social Care Trust would like to invite you to attend a creative and interactive workshop exploring health services research. The workshop will be facilitated by THIS Institute (The Healthcare Improvement Studies Institute).
THIS Institute, at the University of Cambridge, is working with a Wellcome Trust award for public engagement to produce a series of creative and interactive workshops exploring health services research.
The workshops are for NHS staff, patients, carers, researchers and anyone else who interacts with the healthcare system.
They aim to show how research evidence is essential for improving the design and delivery of healthcare as well as how research can have a real impact on patients and staff working within the system. The workshops are based around a short theatre piece showing a patient’s journey through care, and then use participatory forum theatre techniques to start conversations around the impact and importance of research.
When: Friday 30 November 2018
Where: Lecture Theatre1, Trust Headquarters, MDEC Building, Altnagelvin Hospital
Time: 2.00pm – 4.00 pm
If you wish to attend please RSVP by Tuesday 20 November 2018 to:
Health Improvement, Equality & Involvement Department,
Western Health & Social Care Trust,
Maple Villa, Gransha Park, Londonderry, BT47 6WJ
Telephone: 028 71865127; E-mail: email@example.com
If you have any specific support needs please notify the office as soon as possible.
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
Register NOW for our annual general meeting and Autumn Meeting, 3-5 pm, 25 Oct, at Grosvenor Hall, BCM, Glengall St.
Our annual general meeting includes formal updates on our report and accounts presented by directors and the appointment of directors to fill current vacancies.
Then this formal business will be followed by updates from
- our NIRDP Project Officers, Tanya and Ian;
- QUB?Centre for Public Health;
- the Neurological Care Coordinators, and
- the Ten Thousand More Voices programme.
There will also be tea/coffee and biscuits (and cake!)
Come along to hear about what is happening, and to make your voice heard on future priorities for NIRDP.
Register now- by email to us at firstname.lastname@example.org or via eventbrite: https://www.eventbrite.co.uk/e/nirdp-annual-general-meeting-tickets-51068616607