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

 


 

 

 

 

Posted in Events, Rare Disease Implementation Plan, Uncategorized | Tagged , , , | Leave a comment

An Honour

We are delighted to share the news that our volunteer Christine Collins, has received the honorary award of MBE from Her Majesty The Queen today for her outstanding services to people with rare diseases.

Christine Collins, MBE

Christine, a retired civil servant, is well known for her role as the founding Chair of the Northern Ireland Rare Disease Partnership in 2011 as well as being a widely respected former NI Human Rights Commissioner and winner of 2017 CO3 Trustee of the Year award.

The New Year Honours lists 2018 recognise the achievements of a wide range of extraordinary people across the UK.

Christine comments “It is such a great honour to be recognised with this award; I am absolutely thrilled. I also feel grateful to be able to help bring to light the issues for those who are living with or affected by rare conditions across Northern Ireland.”

Current Chair of the Charity, Fiona McLaughlin adds “We feel incredibly proud of Christine and are delighted that all her hard work has been recognised in this way. Christine has been at the heart of our charity for many years and works tirelessly to ensure that no one should be disadvantaged because of the rarity of their condition.”

Posted in Updates | Tagged , , | Leave a comment

Queens University “Patient Passport” Study 

The Northern Ireland Rare Disease Partnership are supporting a research study being run by Queens University called the “Patient Passport”.  This study is researching the benefits of a document that people who manage a rare condition can carry around with them. The document details all the necessary information about their condition, their needs and their daily life and support mechanisms.

Queens are recruiting at present for participants in the study and wondered whether you might know of an individual who would be interested in taking part in this initiative, or whether you might be happy to share information on this initiative with any relevant contacts.

This study, if successful could have a very positive impact on improving communication between a wide range of organisations for people with complex health needs.  Something to be truly welcomed.

We hope you find this as interesting as we do!

Please get in touch with us on info@nirdp.org.uk if you would like further information.

Posted in Uncategorized | 4 Comments

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.

This slideshow requires JavaScript.

 

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

 

Posted in Events | Tagged , , , , , | Leave a comment

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.

Posted in Events, Uncategorized | Tagged , , , , , , , , | Leave a comment