News

Best wishes from the NIRDP to Dr Heather McCluggage on her retirement

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 Rare Disease & Rare Cancers Survey

 

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/

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 by contacting info@nirdp.org.uk show that we are #StrongerTogether, and help make a difference in 2019!

All money raised will go directly towards NIRDP 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 

Virtual Living Well with events 

Patient Empowerment/Advocacy

This session will support self-advocacy, which is the ability to speak-up for yourself and the things that are important to you.

To sign up email: info:nirdp.org.uk

 

Caring for your Mental Health

Listen to Professor O’Neill share tips and techniques on how to look after your mental health.

 

Social Café

April Friday 30th at 11am, come along to our informal session  – an opportunity to meet others, share, connect and support. Open to all our rare disease community.

 

Living Well with…Programme ( Via Zoom)

Please see all free events below: 

The concept of the ‘Living Well with…’ programme is to offer a series of online events, geared specifically at people living with, caring for, working with or friends of someone with a rare condition. All sessions will be led by the NI Rare Disease Virtual Hub Support Team – Edel & Caroline – and will feature a host of guest speakers covering topics such as exercise, advocacy and mental health.

Details below of free events: 

3rd March @330pm – T’ai Chi delivered by Disability Sport NI.  Come along and try an Introductory session – suitable for all abilities.
12th March @11am –Rare Disease Parents & Carers Information Session, 
with Guest speakers from:
‘Contact’ & ‘The Family Fund ‘ Gain information on services available from Contact – a charity which supports disabled children and how to access funding from the Family Fund and meet up with other carers and parents.
26th March @11am – Rare Disease Social Cafe: this is a really informal session to give our rare disease community the chance to get together for a chat over Zoom.
31st March @3.30pm Love to Move – delivered by Disability Sport NI. Come along and try this Love to Move musical movement session, suitable for all abilities.

NOTE: If you would like more information or to sign up, please email info@nirdp.org.uk or call 07704476929