News

Rare Disease Day 2020: Joint North South Event, Belfast 28 February

Register now for the 2020 Joint North South Rare Disease Day Event!

NIRDP are working with Rare Disease Ireland and others to plan an inspirational and informative day, in QUB’s  Riddell Hall on 28 February 2020. Spread the word, and follow the link below to register..

 

https://www.eventbrite.co.uk/e/joint-north-south-rare-disease-day-conference-tickets-90128668273?aff=ebdssbdestsearch&fbclid=IwAR0Ibl-6ZYqOjm9zQdwaFYS6Na8qjlqu2uf9c8L4cWRfpx_W73W-0zWMHiE

 

Ards and North Down Rare Disease Forum: Forthcoming Events!

Thanks to the generous support from Ards and North Down Borough Council, we are holding our second North Down and Ards Rare Disease Forum event on 16 January 2020, in the Carnegie Library, Hamilton Road, Bangor BT20 4LH, from 12.15pm to 2.30 pm.

This event is focussed on those who are caring for someone with a rare condition,  in partnership with the QUB Rare Disease Team, who are gathering evidence about how support for rare disease carers could be improved.

Outline Agenda 

12.15 Refreshments:  (tea, coffee, water, scones, cake)

12.35 Welcome:  Dr AJ McKnight, Queen’s University, Belfast

12.45 Carers Research Project: Julie McMullan and Kirsten Downes, Queen’s University Belfast

13.00 Facilitated Conversation: Exploring challenges, what is good support, and priorities to improve support for cares across Northern Ireland (Facilitator: Grace Henry)

14.20 Close:  Rhoda Walker, Chair, NIRDP

 

Participant Packs with carer resources will be provided to attendees

Information Stands will include NIRDP, HSC Care Co ordinator, Carers NI; Contact a Family, Family Fund

 

Please do come along: there will be good company and cake,  information and support; and a chance to influence and shape change.

 

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 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