NIRDP wish Dr Heather McCluggage a very happy retirement, she will be sorely missed by all who had the privilege of knowing her over her years working in paediatric palliative care. She was a valuable resource and support to all of us within NIRDP, particularly in the North West.
As a very fitting tribute to all of the fantastic work that Dr Heather McCluggage has achieved over the years the Derry Journal has written a beautiful piece where they say that she “has been described as a ‘guardian angel’ for children with life-threatening or life-limiting illnesses and their families.”
To read more on this feature click on the link to The Derry Journal here.
EURORDIS, through its Rare Barometer programme, has launched a new survey on rare diseases/ rare cancers patients’ experience of treatment. The purpose is to highlight unmet treatment needs.
The results of the survey can be very useful for the advocacy work that EURORDIS do in the field of rare cancers and would complement other survey’s results you may have completed for the organisation before.
EURORDIS have a team of professional researchers, specialised in surveys, who shall be able to conduct a thorough analysis of the responses received.
The survey is available in 23 languages and is intended for patients, their family members and carers. All responses are anonymous and will be kept in secure storage only accessible to their research team.
The survey shall take about 10 minutes to complete: http://bit.ly/eurordis-survey
EURORDIS would like to reach out to all who are affected and ask them to please answer this survey and disseminate it widely to anyone else that you know who may also be affected.
The more results that the EURORDIS team are able to gather the more they shall be able to sort results by:
– Age group (paediatric cancers vs rare cancers in adult)
– Countries (or maybe just Western Europe vs Eastern Europe)
– Type of cancers (or maybe just haematological malignancies vs rare solid tumours)
Please also note that the research team shall be able to come up with tailored infographics, based on our request and needs.
The survey is open until 30 April.
EURORDIS Website: https://www.eurordis.org/
Before Christmas, NIRDP wrote to the Secretary of State for Northern Ireland asking for reassurance that access to medicines, especially those specialist drugs needed for rare diseases, would be maintained in the event of a No Deal Brexit.
Her reply is below:
Response – SoS – Ms Walker – MC-19-83
Also, the following Written Statement has been issued by the UK Minister of State for Health, Stephen Hammond: https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2019-02-25/HCWS1358/
Essentially, these confirm that Northern Ireland has been included in the UK wide contingency plans; and access to medicines and medical supplies (including for clinical trials) should be secure, safeguarded by the provision of:
- additional stockpiles in case of delays to ferry crossings;
- air transport for time critical supplies;
- prioritisation of medical supplies in the ferry spaces which government has purchased.
If anyone has a particular worry, contact us on email@example.com, and we will follow up.
IRELAND CONFERENCE: DUBLIN – SUNDAY 23 JUNE 2019
The British Porphyria Association are delighted to announce their very first conference in Ireland. This will be in Dublin at the Ashling Hotel on Sunday 23 June 2019 from 1200 to 1700.
The invitation is open to all porphyria patients and their support networks, and it is completely free to attend.
The programme is still being finalised but there will be doctor talks with the support of various porphyria specialists from across the UK and Ireland, as well as patient talks, updates on research and plenty of opportunities to speak with other porphyria patients and their families/friends.
If you would be interested in registering for this event contact firstname.lastname@example.org ASAP
For more details log onto www.porphyria.org.uk
Or call 0300 30 200 30
The Centre for Public Health at QUB (@CPH_QUB) are researching the experience of using complementary and alternative medicines for rare diseases in Northern Ireland. As part of this work, NIRDP and the Centre for Public Health are hosting a discussion workshop for people with experience of using complementary and alternative medicines, or who are considering this approach, to share experiences and gather information.
The Workshop is in Lecture Room 1 at Riddel Hall, from 10.30 to 12.30 on Monday 25 March 2019: there will be tea/coffee/water/juice and traybakes; places are limited to 25, so please register and share your experience!
The Centre for Public Health at QUB (@CPH_QUB) are researching the experience of using complementary and alternative medicines for rare diseases in Northern Ireland; and ran a Survey to gather information (see the post below)
NIRDP and the Centre for Public Health are now hosting a Discussion Workshop for people with experience of using complementary and alternative medicines, or who are considering this approach, to share experiences and gather more information.
The Workshop is in Lecture Room 1 at Riddel Hall, from 10.30 to 12.30 on 6 March 2019: there will be tea/coffee/water/juice and tray-bakes! Places are limited to 25, so please register now, and share your experience and questions!
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