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 firstname.lastname@example.org, and we will follow up.
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
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.