Rare disease and research – find out more

Rare Disease and Research

25th September, 2014

6.30pm

Postgraduate lecture theatre, Belfast City Hospital

genes

 

Reception from 6pm, with food and drink

6.30 An introduction to the Rare Disease Plan  Christine Collins, NIRDP and HDANI

6.40 Huntington’s Disease  Majella McConville, HD Specialist Nurse

7.00 KEYNOTE  Why does research matter? Charles Sabine, international patient advocate

7.30 Research on a shoestring  Professor Patrick Morrison, Professor in Genetic Medicine, QUB

8.oo Rare disease research- the nuts and bolts!  Dr Amy Jayne McKnight, senior lecturer, QUB

8.15 Panel discussion, all speakers

8.30 End

To register attendance, please email events@nirdp.org.uk, including any dietary requirements

 

This event is run by Huntington’s Disease Association NI, NIRDP and the Public Health Agency.

 

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Disability Pride Parade 2014

Get Set for Disability Pride Day!

We are now getting names, numbers and other details for the Grand Parade from Writers’ Square (St Anne’s Cathedral) to the City Hall; so please go to

http://nirdpdisabilitypride2014.eventbrite.co.uk to register,  NOW!!

We will have seats on buses for those who need them – and some wheelchair spaces on the lovely state of the art bus which Nu Track are loaning for the occasion…

And space in the Parade for those who want to walk, dance, zoom, or otherwise take part in the Parade to the City Hall… BUT we do need to know numbers and other details, so we can sort out the detailed arrangements..

Or you can just join the fun at the City Hall itself: we will have a NIRDP tent, to be a site for people to meet up and mingle – and set forth to enjoy all the fun of the fair!

ANY QUESTIONS? email pride@nirdp.org.uk

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Northern Ireland Statement of Intent Published!

DHSSPSNI have today published the Northern Ireland Statement of Intent, setting out how work to implement the 51 commitments contained in the UK Rare Disease Strategy will be taken forward in Northern Ireland.

The Statement of Intent establishes a Northern Ireland Rare Disease Stakeholder Group which will steer the development of the Northern Ireland Rare Disease Implementation Plan, to be published for consultation this summer.

Read the Statement of Intent, see the 51 Commitments, and see who is involved in the Stakeholder Group here:

http://www.dhsspsni.gov.uk/statement-of-intent-rare-diseases

This is a welcome step forward in the long process of making a real difference for all those living with with rare disease in Northern Ireland.  We are looking forward to the draft Implementation Plan; and we will be making sure your views are gathered and represented in developing the final Plan.

Keep in touch through this website; and make your voice heard, by sending your views to: info@nirdp.org.uk

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Taking part

Do you want to talk about your experience of A&E?

Maybe take part in Disability Pride on 20th Sept?

What about influencing the NI Implementation Plan for rare disease?

We can do all of them.

Northern Ireland Human Rights Commission are looking at people’s experience of A &E. How was dignity preserved? Was there appropriate information? Were you able to participate in  decisions made about your care?

NIHRC

NIHRC want to hear from patients, family members, carers and staff, and will accept anonymous submissions. It’s not about individual cases, or identifying staff- the purpose is to analyse how the NI Executive is meeting international human rights standards, in particular the right to health.

Submissions will be accepted via Freephone 0800 028 6066, on-line, or at a series of public meetings across NI (Belfast, Bangor, Downpatrick, Newry, Armagh, Ballymena, Coleraine, Derry~L’Derry, Omagh & Enniskillen) in September and October.

DisabilityPride

DisabiltyPride will be a major celebration of diversity taking place in Belfast on 20 September 2014. There’ll be a parade for walking/ rolling/ pushing/ travelling by float (floating?), a concert with music and comedy, food and retail tents and charity tents for activities, information & fundraising. NIRDP have booked 2 tents for use by the partnership – space for banners, teddy bears, leaflets etc. Contact info@nirdp.org.uk if you want to share the space, at no cost.

‘Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group’s assumption that there is something inherently wrong with our disabilities and identity.’ Sarah Triano.

During the summer, DHSSPS will publish the  NI implementation plan (of the UK rare disease strategy) for  consultation. We’ll have 12 weeks to make copious comments (thanks to Janet B for that one!) emphasising all the things we think are important- access to medication, appropriate referral to specialists, centres of excellence, the importance of translational research, a clinical trials website… and many more! We’ll share the plan here when it’s available, or it will be on the DHSSPS site.

What would you like to do?

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NIHRC: National Inquiry into Emergency Care

The Northern Ireland Human Rights Commission (NIHRC) has launched a National Inquiry into Emergency Care.

The Commission wants to hear from those who have recent experience of Emergency Care, including from patients, carers, and members of staff.  There is a confidential freephone, open from 10 am to 3 pm Monday to Friday, for the next three weeks; or you can complete an online Questionnaire.

The Commission will also be holding Public Hearings in the autumn, across Northern Ireland, to go into more depth on the emerging issues; and will be visiting A & E Departments.

This is a chance to have your say on your experience of Emergency Care, in a confidential, inquisitorial manner, and to help build recommendations for improvement: go to http://www.nihrc.org/inquiry to see full details!

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Partnership Meeting – 17th June

A date for your diary: we will be holding a Partnership Meeting from 11.00 to 14.00 on 17th June 2014, in the Ulster Hall, 34 Bedford St, Belfast, County Antrim BT2 7FF.

Register below.

This is an opportunity to meet up again, and to hear first hand about:

  • Plans for Belfast’s first Disability Pride Day (20th September 2014) What’s it all about? How can we get involved? How can we make this a day for us all to be proud of?
  • Where are we on developing the Northern Ireland Rare Disease Implementation Plan?
  • What’s happening on getting tangible actions underway around improving rare disease care?
  • Raising Awareness of Rare Disease – what should we do next?

We are also working on how best to respond to the Draft Rare Disease Implementation Plan, when it is published, we think at the end of June, for a 12 week consultation.

Most importantly, we need to do all we can to ensure that actually implementing the Rare Disease Plan is a Ministerial Priority. So we need to make sure that all our elected representatives know how important rare diseases are; how much impact they have on people’s lives; and how much improvement could be made through implementing the Plan. Everyone can be involved in this, through talking or writing to your new Councillors; your MLA’s; your local papers about the Plan; or just by spreading the word through family and friends.

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Children travelling for specialist care

Are your children travelling for specialist care? Belfast Trust and the HSCB want your help with improving the system.

The Belfast Trust Children’s Network is improving the process and information available for families of children and young people that travel for specialist care outside of Northern Ireland. The Trust previously conducted focus groups with parents of children who have travelled for care. The following priorities were identified:

  • More consistent and easy to reach contact for families that travel for care before, during and following their journey
  • Improved information regarding travel, accommodation, financial arrangements and the specialist hospital that their child has been referred to

The Belfast Trust is now ready to appoint a paediatric patient experience officer to be a consistent, easy to reach contact point for families.

The next stage is providing information packs containing the appropriate information.

A draft pack has been produced which has 2 parts:

Part 1: information that will be useful for all families. This is planned to be in an A5 booklet. You can see the booklet here: http://www.patientclientcouncil.hscni.net/uploads/files/Family_Travel_Pack.pdf
Part 2: Hospital specific information that will be tailored to individual families. It may change often so will be added to the booklet in loose leaf form.
An example for Alder Hay Hospital,  is here: http://www.patientclientcouncil.hscni.net/uploads/files/Alder_Hey_Specific_Info.pdf

The Children’s Network would appreciate any feedback that you have on the content of these documents: this is your chance to make sure that are as good as they can be, for all those who have to travel for specialist care for their children!

Please contact Kris McKeever, Children’s Network Manager on 028 90 632249 or email kris.mckeever@befasttrust.hscni.net with any feedback you have by Friday 23 May 2014.

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22q11DS: 22 days awareness

22q11 Northern Ireland has just started 22 days of activity to raise awareness of 22 q: a great initiative – follow it on Facebook at 22q11 Northern Ireland

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SURVEY DEADLINE EXTENDED

Good News!  Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard.

If you haven’t done so already, go to the Survey (see the Living Every Day with Rare Disease tab, on the bar above) and complete the survey; or e mail info@nirdp.org.uk and we will send out paper copies, or arrange for someone to phone you to complete it .

And please pass the word around; get Support Group Members, carers, professionals to complete the Survey too. We need as many responses as we can, to demonstrate that Rare Diseases matter to a lot of people, and to show the impact that they have on people’s lives…

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Rare Disease Symposium

QUB medical students are holding a symposium on rare diseases on 27 March, at 7pm.

quams
For further information, and registration, see below.

http://www.quams.org.uk/events-1.html

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