Rare Disease Information Hub: We Need Your Views

It has been identified through recent research that there is a need for the development of a website or “information hub” where rare disease information can be accessed or linked in an accessible format.

We are keen to improve information sharing and communication for rare diseases in Northern Ireland, however,  as resources are limited, we are now keen to seek your views on which components should be developed first as we may need to develop items specifically tailored for Northern Ireland or signpost individuals to appropriate resources that exist elsewhere.

We would really value your input and as such would be very grateful if you would take the time to consider completing an online survey here:

https://www.smartsurvey.co.uk/s/Hub_priorities2018/

Results from this survey will be collated anonymously and used to help develop resources for individuals affected by rare disease(s) in Northern Ireland.

Please do indicate if you are happy to be contacted should there be follow-up questions. No identifiable information will be used without your explicit consent in a follow-up conversation.

If you have any questions or wish to provide further details please do not hesitate to get in touch via email: Julie.mcmullan@qub.ac.uk.

Thank you for your help with this research and for considering participating in this project.

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Event notice: Thriving as a carer, 19th April, White Horse Hotel

This one day event, “Thriving as a Carer” is primarily aimed at individual carers who care for people with life limiting illnesses. It will focus on helping delegates to better understand the services and support available to those who are caring for someone with palliative care needs including those at the end of life.

The conference, which takes place on Thursday 19th April, at the White Horse Hotel, 68
Clooney Road is being co-hosted by Foyle Hospice, Derry Well Women and the All Ireland Institute of Hospice and Palliative Care.

Participants will have an opportunity to meet and talk with a number of organisations who will be on hand to provide information, advice and support about various illnesses, access to services and guidance on practical issues.

Places are limited and available on a first come, first served basis. If you would like to attend please RSVP by completing the registration form (click on this link) by email to andrenaarbuckle@foylehospice.com or telephone 028 71351010 no later than 12 noon on Friday 30th March 2018 including details of any dietary requirements.

 

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Rare Disease Day!

Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We know that it’s not that rare to have a rare disease, but that’s not how it feels when you and your family experience that odd illness that nobody knows much, if anything, about. We know how important it is to come together and share experiences, to learn from each other and to amplify each other’s voices. We know the importance of working together to make change happen.

Today, NIRDP are holding events, hosted by the Mayor of Ards and North Down Council, and the Mayor of Derry City and Strabane Council. Many thanks to them for their help and hospitality. On Monday we host the 4th Joint North South Conference on Rare Disease at Riddel Hall, Belfast. We are all busy, and delighted to be so.

We hope you can join us- at an event, on Facebook or Twitter. Take some time to acknowledge how awesome you are, and the progress we’re making together. And, if you can, grab a slice of cake to celebrate!!

 

 

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While you sleep, Lucia…

We have received this beautiful and touching piece written in 2015 by Gillian Cassidy, Founder of 22q11 Northern Ireland and mother to Lucia.

Thank you for sharing Gillian.

#be22qaware #22qawarenessdays
 

WHILE YOU SLEEP, LUCIA…

How many hours in a hospital chair with you?
How many worrying thoughts?
How many painful tears will you cry?

The rain beats against the window
The many drops can’t compare to the moments of concern for you.

Watching your body tied to wires due to underlying missing genes
Ties me up with resolution to make your journey count

The years you had no voice, no words
Seemed to have created in me the need to initially be your voice then the voice of change.
The voice of advocacy.

The recounted medical history underlines just how many bodily systems are affected.
It brings to the forefront how much you deal with yet how normal you think it all is.

Your dada and siblings at home spending hours without us.
The updates to worried family and friends.

When did an ever ready hospital bag become the norm?
When did you become adapt at reassuring your 3 year old sister you would be home in a “minute of little time”?
When did your 2 year old brother start begging “I want you”?

Right now as you sleep in this hospital bed.
Right now the photos of you are your words
Right now people know about 22q because of you.
Right now is counting for something
Right now you are changing the world.

When I ask them if they know about 22q it’s not a idil question.
It’s me wanting to start a revolution, for you and all those like you.

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Joint North South Rare Disease Conference: 5 March 2018

 

We are busy finalising the Programme for this, the Fourth Joint North South Rare Disease Conference. There are still some details to sort out, but see below  for the latest version.

Programme

09.00 – 10.15               REGISTRATION AND COFFEE

10.15 – 10.30               Welcome  and Introductions

Fiona McLaughlin, Chair NIRDP & Philip Watt, Chair MRCG

10.30 – 10.45              “Nothing about us without us”

Les Allamby, Chief Commissioner, NIHRC

10.45 – 11.30               Rare Disease and the Strategies

Dr Michael McBride, Chief Medical Officer, DoH (NI)

Another Speaker TBC

11.30 – 12.30               Participating in Research

Dr Maurice O’Kane, NI Clinical Research Network

Dr Claire Lundy, Regional Paediatric Neurodisability Service

Another Speaker TBC

12.30 – 13.30               LUNCH

Poster Competition:    “Nothing About Us Without Us” (see below)

Side Event – Northern Ireland Human Rights Commission

13.30 – 14.15               Panel Discussion – BUILDING CAPACITY

Chair – Mary Hinds, PHA

Panellists to include: Derrick Mitchell, IPPOSI; Gemma McKillen, EUPATI;  Julie Power, VIA,

 

14.15 – 15.15               WHAT DOES SUCCESS LOOK LIKE?

100k Genomes Programme – Dr AJ McKnight

The 22 Q Journey: Anne Lawlor, Chairperson 22q11 Ireland         Support Group; Dr Tabib Dabir, BHSCT; Gillian Cassidy, 22Q Support Group Dr Mary Dallas, PHA

22 Q Video

15.15 – 15.30               COFFEE BREAK

15.30 – 16.15               Panel Discussion – BEYOND THE STRATEGIES: NEXT STEPS

Chair – Professor Ian Young

Dr Avril Kennan, MRCG

Philip Watt, MRCG

Anne Lawlor, Chairperson 22q11 Ireland Support Group

2 Members TBC

16.15 – 16.30               PRESENTATION OF POSTER COMPETION PRIZES & NIRDP AWARDS

Fiona McLaughlin, Philip Watt & Professor Ian Young

16.30                           CLOSE – Philip Watt

Register NOW to be sure of your place!

Note:  There is a Poster Competition: the Topic,  is “Nothing about us without us” tying in with the Rare Disease Day Theme of  “Research: Patients are not only subjects but also proactive actors in research”https://www.rarediseaseday.org/page/news/the-theme-for-rare-disease-day-2018-is

The Competition (with prizes!)  aims to showcase examples of research, academic, clinical, social where patients and families were engaged and  involved; what difference it made; and what is happening now and into the future.  So if you or your organisation have worked with rare disease patients, families and carers to do any research, surveys, etc which  are being used or could be used to influence and shape treatments,  care and services for people with rare disease, send a short abstract to rarediseaseday2018@health-ni.gov.uk ,  with POSTER COMPETITION in the Subject line, by Friday 23 February.  Posters must be A0 size Portrait, and brought to Riddell Hall on the day by 9.00am on 5 March 2018 for display.

 

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