Join us in raising Rare Disease  Awareness: Host a Rari-Tea 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 Rari-Tea 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 

Register now for Our AGM and Autumn Meeting: 25 Oct, Grosvenor Hall

Register NOW for our annual general meeting and Autumn Meeting, 3-5 pm, 25 Oct, at Grosvenor Hall, BCM, Glengall St.

Our annual general meeting includes formal updates on our report and accounts presented by directors and the appointment of directors to fill current vacancies.

Then this formal business will be followed by updates from

  •  our NIRDP Project Officers, Tanya and Ian;
  • QUB?Centre for Public Health;
  • the Neurological Care Coordinators, and
  • the Ten Thousand More Voices programme.

There will also be tea/coffee and biscuits (and cake!)

Come along to hear about what is happening, and to make your voice heard on future priorities for NIRDP.

Register now- by email to us at info@nirdp.org.uk or  via eventbrite: https://www.eventbrite.co.uk/e/nirdp-annual-general-meeting-tickets-51068616607

Foyle and North West Forum meeting update

The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:

  • Support for carers available via the health and social care trusts
  • Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
  • Courses offered by recovery colleges and how to influence their prospectus
  • Challenges associated with travelling outside NI for medical appointments
  • Challenges for children and parents accessing appropriate educational support with rare conditions. Signposting to SENAC is advised but need to be aware the service is in high demand and early intervention is important .
  • Education Authorities are working under tight budgetary constraints and access to Statutory Assessment and the Statementing process and subsequent provision of support can be delayed.

We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.

The group will continue to meet quarterly, next meeting will be planned for September with details to follow.

 

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

 


 

 

 

 

Partnership meeting and AGM, 5 December

It’s time for our Annual General Meeting and partnership meeting- join us on 5 December at the Pavilion, Stormont, Belfast, BT4 3TA.

 

We’ll be presenting our annual report and accounts for 2016-2017, updating everyone on what we’ve been up to since, discussing the results of the survey on communications, and planning for the way ahead. And, of course, formally launching the Stronger Together project with the Big Lottery Fund!

Research teams from QUB will be helping us to consider educational priorities, and a patient passport.

We’ll start with scones and end with lunch. Will we get a cake?

We’d love you to join us- just register below so we count you in.

Registration

 

Foyle & NW forum

We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area.

Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and WHSCT to support people living or working with rare disease. She comes to us with many years nursing experience at Great Ormond Street Hospital. Tanya can be contacted at tanya@nirdp.org.uk  07927 170 138 and will be working 18 hours per week.

We welcomed Helen, Jane and Ashleen from QUB, all of whom are working in the area of rare disease- education, communication and genetics.

Gina updated us on the work of the Our Children’s Voice group- we’re looking at how NIRDP and OCV can work together to support families in border areas.

Carol reported back from one of the WHSCT meetings on savings/ cuts. The financial shortfall is less significant now, but there’s always negotiations to be had. We encourage members to get their voices heard and participate in discussions.

Creea Convery from MND Association raised the issue of challenging referrals from GPs to specialists- either not soon enough, or with inadequate information for the neurologists to triage appropriately.

Neurological Care Co-ordinator, Tracey Magowan, talked about the role of care advisers based at neurology clinics. They support patients and families to navigate the systems, sign post, and provide localised information and fact sheets. Another care adviser is being recruited to cover clinics at Altnagelvin.

We had another chat about the needs of patients with EDS. NHS England are working on a care pathway. NIRDP are interested in developing a piece of work looking at the patient journey. This may form part of the peer support work during the Stronger Together project. Watch this space!!

We agreed to gather again for a pre Christmas cuppa and chat at the City Hotel on 14 Dec, 11am.

Stronger Together Project starts work!

 

Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry! 

Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as Tanya Boggs, our first “Stronger Together” Project Officer, starts work!

Fiona McLaughlin (NIRDP Chair) and Sandra Campbell (NIRDP Director and Foyle and NorthWest Rare Disease Forum Lead) welcomed Tanya; and started the process of building our “Stronger Together” Project, funded by a grant from the Big Lottery.

Our NIRDP vision is that no one is disadvantaged because of the rarity of their health condition. Stronger Together is a 2 year pilot project which will enable people who live or work with rare disease to connect, advocate, educate and innovate in partnership with each other and others (e.g. Department of Health; other Departments; other charities). The project will provide peer support, volunteering, networking and advice.

It aims to make the ideas put forward  in the Communications Workshops earlier this year, for improving accessibility to information and support into a reality; and so to make a positive difference to the way people affected by rare diseases live.

Come along to the  Foyle and North West Rare Disease Forum meeting in the City Hotel, Derry on Monday 6 November from 11am to 1 pm to meet Tanya and others, and to celebrate this first step on the road!

ANNUAL VASCULITIS IRELAND AWARENESS ALL IRELAND CONFERENCE

Vasculitis Ireland Awareness are hosting their annual All Ireland conference on 28th and 29th of October in the Royal Marine Hotel, Dun Laoghaire.

This year will open with a patient panel, where attendees will have the opportunity to hear more about living with Vasculitis, from diagnosis through to management, comorbidity and the disease from the carer’s perspective, followed by a Consultant’s panel in the afternoon with specialists from Rheumatology, ENT and Orthopaedics.

Julie Power, Founder and Chairperson at Vasculitis Ireland Awareness says “The event will offer many opportunities for discussion about Vasculitis and will include information for attendees about recent developments in research as well as offering a chance to talk to the people involved. This is an ideal opportunity to meet others living with the same issues and to engage with the experts.”

The cost of the event is €45 with accompanying attendees paying €35 each. The cost includes lunch and refreshments on Saturday, after an evening of networking the event will close at noon on Sunday.

To register visit  https://vasculitis2017.eventbrite.co.uk/ and follow us on Facebook for updates Vasculitis Ireland Awareness, alternatively, if you would like more information about this topic, or the event please contact Julie Power at 02844842889 or email at julie@vasculitis-ia.org.

Who knows what in rare disease? Engagement, information and communication

As part of the work on the NI Rare Disease Plan, NIRDP has been running a series of Workshops across Northern Ireland, and an Online Survey, to identify information needs in relation to rare disease issues; what information is currently available and what information people would like to help them live or work with rare conditions.

On 7 June, a workshop chaired by Professor Ian Young, the Chief Scientific Officer and Chair of the NI Rare Disease Implementation Group,  heard about progress in genetics, presented by Dr Tabib Dabir, Clinical Lead, NI Regional Medical Genetics Service (and member of NIRDP’s Board)  and in metabolics, presented by Dr Clodagh Loughrey, Consultant Chemical Pathologist and Clinical Director Laboratories, BHSCT.

It’s clear from these presentations that the pathway to diagnosis, and the options available for management and treatment of complex and rare conditions, will soon alter dramatically.  Indeed some changes are already happening, with an individual’s genetic make up helping to determine the best course of treatment in some cases. It’s essential that we think through how to make best use of these advances!

Participants then considered the emerging findings from the Workshops and the Survey, presented by Dr Jane Miller, Research Fellow at the NI Genomic Medicine Centre  and NIRDP Chair Fiona McLaughlin, before working in five groups to validate and  consider how progress could be made on the key areas identified in the Workshops and in the Survey.

Suggestions for improving information and communications

  • Develop care pathways / flow charts / support plans / signposting.
  • Have one ‘go to person’ who co-ordinates care and information sharing between those involved in care:  “Care navigators” to support patients, families, and clinicians.
  • Develop a hub / portal for accessing information for medics, other professionals and people with a rare condition/disease.
  • Develop referral routes to support groups, or to other people with the same condition, from the point of diagnosis.
  • Look and take learning from other models e.g. Cancer Care; Maternity Care (where mothers hold information in The Red Book) Downs Syndrome etc.

There were many valuable suggestions, and much learning across the whole group- for example, about the proposed introduction of the SNOMED coding system across both primary and secondary care; and planned technological developments within Health & Social Care.  Also, locally based training for patients, along the lines of the EUPATI modules some of our members are already familiar with, is hopefully to become available.

We are still processing all the information that emerged; and planning follow up through a virtual working group to take forward the ideas in more detail.

Further details to follow- watch this space!

And if you haven’t already done so, please complete the Survey and get your family and health care colleagues to do so too …