News

BREXIT and access to medicines

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 info@nirdp.org.uk, and we will follow up.

Join us in raising Rare Disease  Awareness: Host a RariTea event!

Raising awareness of Rare Diseases is crucial to every aspect of our work to improve services and the quality of life.  So in Spring 2019 we are launching our first Northern Ireland wide awareness-raising Campaign, aiming to make an impression in every town and townland.

Our approach is based on the popular “coffee morning” model, but our focus is on our favourite tipple, Tea!

We are partnering with local tea company, Infuse Artisan Tea, a Coleraine based business, who will be helping to lead the way.

The RariTea events will coincide with the worldwide events marking International Rare Disease Day on 28 February, so will focus on the period from mid-February to mid-March (21st February – 7th March)

To get involved, just get together – a few individuals, an organisation, a business, a sports team – and hold a RariTea event. It can be a posh Afternoon Tea; or a mug of Builder’s Brew…just have some tea, and take a picture (or two) for Twitter, Instagram etc tagging @NI_RDP (twitter) or @NIRDPNews on Facebook, and use the hashtag  #RariTea

Register your interest via this link; show that we are #StrongerTogether, and help make a difference in 2019!

All money raised will go directly towards raising funds for a full-time Northern Ireland Coordinator who can help families and patients affected by rare conditions access the help and support that they often fail to receive.

Show your support this February and help make a difference to the lives of those affected by rare and hard to diagnose conditions.

To find out more contact us via email at info@nirdp.org.uk 

Complementary and Alternative Medicine (CAMs) Discussion Workshop- Rescheduled!

 

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!

Complementary & alternative medicine (CAMs)in Rare Diseases: Discussion workshop.

 

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!

GP’s perceptions and experiences of rare diseases 

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.

THANK YOU!

 

QUB Survey: Complementary & Alternative Medicines for Rare Diseases in NI

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

Tuberous Sclerosis Patient Conference: Understanding TSC-Associated Neuropsychiatric Disorders (TAND)

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[92980], and email directly to Claire Kirk at Claire.kirk@tuberous-sclerosis.org

Date: Fri 25th Jan 2019

Venue: Post-graduate Centre, Belfast City Hospital

 

Agenda:

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)

11.30               Coffee

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

13.00               Lunch

14.00              Chair: Dr Deirdre Donnelly

14.00               Patient perspective

14.15               Managing TAND: current treatments & future research: 

Prof Petrus de Vries (South Africa)

15.15               Coffee

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

‘What Works’ Report from The Community Development and Health Network

 

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[84424], 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: info@cdhn.org.

Healthcare in the UK: Information website & newsletter sign up

Please find below a link to a very useful website as has been recommended to us by one of our members.

The site offers all the latest news from the healthcare sector, about health care across the UK.

There is an opportunity to sign up for a daily or weekly newsletter to keep you up to speed on all new happenings within this sector.
https://www.healthcareintheuk.co.uk/

You can also follow via FB at @healthcareintheuk or twitter @myhealthcare_uk

Personalised Medicine Awareness Month 2018

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.

#CrackingTheCancerCode #PMAM18