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!!

 

 

Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March

 

Rare Disease Day is coming !  This year, we are looking forward to welcoming you to the fourth Joint North South Rare Disease Day event, held with our friends the Irish Rare Disease Taskforce, on 5 March 2018 in the splendid surroundings of QUB’s Riddel Hall, Stranmillis Road, Belfast.

The Theme for this year’s Rare Disease Day is Research; and the Joint North South Conference will focus on:

  • Rare Disease and the UK and R.o.I Strategies
  • Expert Patients: Engaging with Research: EUPATI UK and RoI
  • Patients and Researchers: examples of good practice
  • Beyond the 2016 to 2020 Strategies: Next Steps

We are still working on the Programme, so watch out for updates!

Register now (FREE)  here

 


 

 

 

 

Rare Disease Day 2016 Patient Voice and Empowerment

Rare Disease Day 29 February is getting close!  Here are the full programmes for the Conference in Riddel Hall, and for the Reception in the Long Gallery at Stormont; follow the links in the post below to register NOW

The Conference is a unique opportunity to hear from Dr Michael McBride ,our Chief Medical Officer and from a range of patients, carers, and professionals about what is already happening; and to engage in developing what more could be done to make a difference to the lives of those affected by rare disease.

INTERNATIONAL RARE DISEASE DAY CONFERENCE: PATIENT VOICE AND EMPOWERMENT
10.00 to 10.30 Registration
10.30 to 10.35: Welcome – Christine Collins, Chair, NIRDP
10.35. to 10.45: Keynote Address: Rare Disease and HSC Transformation- Dr Michael McBride, Chief Medical Officer, Northern Ireland
10.45 to 11.20: Educating: Miriam Martin, SACA; Dr Mairead Corrigan, QUB; Michaela Hollywood, MDUK Trailblazers;
11.20 to 11.55: Advocating: Fiona McLaughlin PSPA NHS IQ Certificated Change Agent;  Noirin O’Neill, EUPATI Fellow; Sandra Campbell, NIRDP Foyle and North West Co ordinator; Carol McCullough, NIRDP Consultations Lead
11.55 to 12.30: Innovation: Alison Wilson, All Ireland Advocacy and Support Officer, MPS Society;Dr Breidge Boyle, UU; Julie Power, Vasculitis Ireland, EUPATI Fellow; Joanne Westwood, N.I. Neurological Care Advice Service
12.30 to 12.45: Round up of Panel Sessions: Reflections
13.00 to 13.45 Lunch: INFORMATION STANDS, INCLUDING RNIB; ACTION FOR HEARInG LOSS; 10K VOICES; AND PATIENT ORGANIZATIONS
13.45 to 14.00: NI Medical Genomic Centre Dr AJ McKnight, QUB
14.00 to 15.15: Seizing the opportunity “POLICY INTO PRACTICE” interactive workshop David Finegan, NIRDP
15.15 TO 15.30 : CONCLUSIONS AND CLOSE

The Long Gallery Reception is a chance to hear from Alastair Kent OBE, the Chair of the UK Rare Disease Forum, about the role of patients in driving and developing change; and to hear from Minister Simon Hamilton about his vision of the way ahead.

NIRDP International Rare Disease Day Reception at Stormont

17.00 to 17.30: Registration
17.30.to 17.45: Welcome and introduction: Kieran McCarthy, MLA; Dr Vivienne  McConnell, Clinical Lead for Medical Genetics

17.45 to 18.00: Alastair Kent OBE: The role of empowered patients in oversight

18.00 to 18.10: Minister Simon Hamilton MLA: Working together to provide high quality care for people with rare diseases
18.10-18.15: Thanks and Close: Christine Collins, Chair NIRDP
18.15 to 19.00: Photo Opportunities and Networking: Refreshments

See the post below to register! 

RDD 2014 Conference

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The second Joint North South Rare Disease Day Conference is taking place on 28th February in Riddel Hall, Belfast. This Conference will bring together policy makers, clinicians, service managers and families and people living with rare disease, to look at what is happening and to see how things can be improved in the future. Click here for the agenda for the day.

Register to attend the Conference

If you need financial assistance to help you to attend, from the Republic of Ireland contact Marie Downes (mdownes@mrcg.ie) and from Northern Ireland contact Cathy McKillop (cathy.mckillop@shinecharity.org.uk)

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There are Poster Competitions for children (up to the age of 18) and for medical/technical issues in the field of rare disease.

Annual General Meeting!

It is hard to believe, but we have been up and running as a company for 18 months, making it time for our first

Annual General Meeting,

11 September in the Ulster Hall, Belfast, from 11.00 to 11.30am

The key items of business are:

• The appointment of the Directors

A Resolution to amend our Articles to increase the number of Directors we can have from 14 to 20. This increase will allow us to build the capacity and increase the skill sets amongst our Directors and given the pace of change and all the work there is ahead this is a very necessary change.

The formal “Business” of the AGM will be followed by a normal Partnership Meeting – time to discuss what is going on, exchange views and experiences, and catch up with all that is happening, across Northern Ireland and further afield, on things which impact on all those living and working with rare diseases.

There is a very long list of interesting and important things, including for example:

• The forthcoming UK Rare Disease Plan: NIRDP are on the UK Stakeholder Group, and participating in developing that Plan
• The Northern Ireland Rare Disease Implementation Plan: The DHSSPSNI have set up a Northern Ireland Stakeholder Group, and planning will be starting in earnest very soon. We are members, and need to make sure the Implementation Plan makes a difference, in the home, in the schools, at the clinic…
• What’s happening on Transforming Your Care? Are we properly linked in to the process at the local levels?
• Planning for next year’s Rare Disease Day event in Riddell Hall, Belfast on 28 February 2014: this is going to be a real opportunity to advocate and educate about Rare Disease issues, so put the date in your diary now, and bring your ideas – we want this to be a fun and memorable day
• Planning for our Rare Disease Awareness Week, starting with a Long Gallery event on 13 January 2014. Another diary date! Who are your MLA’s; who your local papers/media contacts are; please share any ideas on how to get them involved and interested.

We have done an amazing amount in the last 2 years, thanks to the energy, commitment, knowledge, and mutual support of all the members, but we have a lot more to do! There is a wonderful opportunity over the next year to build on the foundations we have been able to lay. To do this, we need to keep up the pace- and that means using all the knowledge, skills, and experience of each and every one of our members to the best possible effect.

So please come to the AGM and Partnership Meeting; hear what is happening; say what you think; and let’s make sure that at the 2014 AGM we have a lot ofprogress to report!

All The Busy

The summer holidays are still in full swing, but the NIRDP volunteers are keeping as busy as ever.

Some have been in Whitehall, involved in the development of the UK Rare Disease Plan. The Plan still needs a lot of work, but we also hope to be involved in the development of the NI implementation plan- turning the UK policy into something that works here in Northern Ireland.

We are meeting with Minister Poots on 22 August to discuss progress on the UK Plan, and our vision for the NI implementation plan, including cross border aspects.

We are developing an engagement exercise survey to capture the reality of living with a rare disease in NI. This is being carried out in partnership with the Public Health Agency and the Health and Social Care Board, so that needs can be understood and service delivery informed. The survey will be run during the autumn, and will be a chance to ensure commissioners understand the real impact of rare disease on an individual and the family.

Members in the North Down constituency meet with Jim Shannon, MP, in July. Mr Shannon has been supportive of rare disease issues, and is proposing a Westminster Hall debate on the UK Plan. Westminster Hall debates are 30 minute or an hour debates on an issue raised by an MP- a Minister responds and others can say things too. The more MPs show interest and support for this, the better- so please contact your MP and ask them to support Jim’s initiative. Any UK charities/support groups, add your weight nationally!

We are planning an event for the Long Gallery in Stormont on Monday 13 January– a chance to launch the results of the survey, and give all the support organisations/ charities  a chance to be there and connect with MLAs. we can use this to show that ‘rare’ doesn’t mean ‘small’ or ‘unimportant’!

And then there’s the initial planning for Rare Disease Day 2014! We’ll be holding this event in Riddel Hall on 28 February, and the focus will be on person centred care. Save the date!!

All of the work of NIRDP is carried out by volunteers, and we are stretched. Do you, or any of your family, friends, colleagues, have skills, experience or time that you could share with us? We have a lot of work to do if we are to develop a sustainable organisation to continue to advocate, educate and innovate on behalf of those with rare disease in NI. Please contact us if you’d like to get involved – we need you.

Lift off!

NIRDP was formally launched on Rare Disease day with much support from patients, families, health professionals and politicians.

We were delighted that the NI Minister for Health, Social Services and Public Safety was able to participate in the event- cutting cake, presenting and, most importantly, spending time chatting informally to patients and families. Minister Poots gave up a lot of his time to support the work of the partnership, and we’re looking forward to ongoing work together. The Minister took the opportunity to launch the long awaited consultation on the UK Plan for Rare Disease. NIRDP will be working actively with RDUK to facilitate consultation within Northern Ireland.

NIRDP is a group of interested families and professionals who donate or volunteer their time. Members have health conditions, caring responsibilities, jobs and family lives. The Partnership could not have developed as it has without the support of others. In particular the vision, leadership and very practical support of the Patient and Client Council. They developed a questionnaire, analysed the results and published a report  on patient experience of diagnosis, and organised the very successful launch event.

The decision of the PCC to film some of the experiences of families living with a rare disease has left us with a wonderful resource for awareness raising. (Once we work out how to upload the films to this site, that is. Watch this space!)

The development of NIRDP is itself a reflection of the method and principle ‘Stronger Together’.  If you’re interested in supporting the work in any way, click on that ‘Join us’ button up there, and we’ll chat soon!

It’s Rare Disease Day — time for a launch or two!

Local advocates call for action on international Rare Disease Day as shocking new report highlights shortcomings in Health and Social Care for people with rare diseases

A new report launched by the Patient and Client Council at Stormont today to coincide with international Rare Disease Day captures how people affected by rare diseases in Northern Ireland frequently face long delays in accessing a diagnosis for their condition and suffer a poor experience of Health and Social Care in Northern Ireland.

The report which is based on a survey conducted of 132 people (both patients and carers) affected by over 60 different rare diseases reveals:

  • 29% of patients wait between 1 and 5 years for a correct diagnosis and over 20% wait over 5 years;
  • 34% of patients are misdiagnosed – 20% of which received inappropriate treatment as a result;
  • Patients have to attend multiple appointments with different health professionals to obtain a diagnosis and it is frequently a battle to do so;
  • 57% of people caring for a person with a rare disease do so for more than 20 hours a day;
  • Over 40% of patients described their experience of the health and social care service in Northern Ireland as “poor” or “very poor”, and nearly a quarter described it as “average”. Only a third of patients described their experience as “very good” or “excellent”;
  • Patients also reported feeling ignored by doctors, and that there is a lack of information and support for rare disease patients.

These findings come as no surprise to the patients and families involved in the Northern Ireland Rare Disease Partnership (NIRDP) which is also being officially launched today.  The NIRDP has been set up to bring together those living with a rare disease, and the clinicians, researchers and others working in the field, to work collaboratively to raise awareness, improve professional training and service provision, and campaign for those living with a rare disease in Northern Ireland.

NIRDP Chair, Christine Collins said:

“The findings of this important Patient and Client Council report reaffirm the need for a strong grass roots organisation here in Northern Ireland working in partnership to improve services and offer support to those living with rare diseases and their carers. We want to bring together the expert knowledge, skills and commitment of the clinicians and researchers and the experience and insights of those living with rare diseases, to put an end to the situation where people rattle around the health system without a diagnosis and fail to get the treatment, care and support they need.”

The NIRDP, along with Rare Disease UK, are calling for a UK rare disease plan to improve services and facilitate much needed research into rare diseases, both in Northern Ireland and across the UK. It is hoped the draft plan will be launched for public consultation today.

The Chair of Rare Disease UK, Alastair Kent OBE said:

“Like all patients, those with rare diseases want to be confident that the health service is doing the best it can to respond to their needs. Services for rare disease patients and their families need to incorporate current scientific possibilities delivered to the highest possible standards of good practice. A plan for rare diseases will create a framework that will allow for the best use of the expertise that exists in Northern Ireland, and ensure that this is effectively integrated with services and support elsewhere in the UK and Ireland. Patients and families need to have confidence that the health service is there for them as it is for everyone else. A plan for rare diseases is a tangible expression of commitment to these patients and families, and a yardstick by which we will be able to measure progress.”