Ards and North Down Rare Disease Forum: Forthcoming Events!

 

Thanks to generous support from Ards and North Down Council, we have been able to arrange two events over coming months for all those living or working with a rare disease in the Ards and North Down Borough!

First, on 9 December 2019 in the Ards Blair Mayne Wellbeing and Leisure Complex , from 10.00 am to 2 pm, we are holding the inaugural meeting of the Ards and North Down Rare Disease Forum: see here to register .  This is a great chance to get together, and to find out more about what is available locally.

Then, on 16 January 2020, in Bangor Library, we are holding an event focussed on those who are caring for someone with a rare condition,  in partnership with the QUB Rare Disease Team, who are gathering evidence about how support for rare disease carers could be improved.

 

Please Save these Dates- and Register to come along: there will be good company and cake,  information and support; and a chance to influence and shape change.

 

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 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! 

Living Life with Rare Disease: Taking the scare out of Palliative Care

It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”.

Palliative care is all about making the very best of life, from diagnosis on; and even when you have no diagnosis.  It’s about how to ensure the support that’s needed to live life to the full, in difficult circumstances.

We have a terrific line up of speakers, so this is a great opportunity to hear and learn about how a palliative care approach can support and improve quality of life, from diagnosis onwards or even if you have no diagnosis.  It’s a chance to have your say about how palliative care can be developed, for all those living or working with rare diseases.
A chance to meet up, make new friends and contacts, and share your knowledge and experience!

Register here:

Outline Programme:
9.30-10.00 REGISTRATION: Tea/Coffee; Scones
10.00 TO 13.45 PALLIATIVE CARE AND RARE DISEASE PROGRAMME:
10.00-10.35 Welcome: NIRDP Representative
10.35-10.45 A Patient/Carer’s Perspective: Sandra Campbell, NIRDP
10.45-11.05 Dr Aine Abbott, RCGP (NI): Supporting Communication: the Patient Passport
11.05-11.25 Dr Damien McMullan, Consultant, Adult Palliative Care
11.25- 11.45 Dr Heather McCluggage, Associate Specialist, Children’s Palliative Care
11.45-12.05. Katie Rigg, Nurse Specialist, Multiple Systems Atrophy Association
12.05-12.25 Donall Henderson, Chief Executive, Foyle Hospice
12.25-12.45 Paddie Blaney, Director, AIIHPC :
12.45- 13.45 Discussion Session: What needs to be done to improve support for rare disease?

LUNCH AND NETWORKING: 13.45 to 14.30
To include Soup, Sandwiches, and meeting and getting to know others.

If you want to join us just for the lunch and networking, please email events@nirdp.org.uk; and we will try to facilitate this; but we would encourage you to come and hear about how a palliative care approach can help make the most of living every day with a rare disease.

Collagen – Why Do We Need It?

With support from the Research and Development Division of the Public Health Agency, and in collaboration with the Regional Medical Genetics Service and QUAMS, we are bringing  two external, internationally recognised experts on Connective Tissue disorders and translational genomic medicine, to join with our local experts in a “mini Symposium”, chaired by Professor Patrick Morrison, on connective tissue disorders.

The expert speakers are:

Professor Dianna M. Milewicz, M.D., Ph.D. President George H.W. Bush Chair of Cardiovascular Medicine Director of the Division of Medical Genetics Professor and Vice-Chair of the Department of Internal Medicine The University of Texas Health Science Center at Houston, TX

Professor William Newman, MA FRCP PhD Professor of Translational Genomic Medicine Manchester Centre for Genomic Medicine St Mary’s Hospital Manchester

Dr V McConnell, MD, MRCGP, DRCOG, PGCCE, Clinical Lead, Regional Medical Genetics Service, Belfast Health and Social Care Trust

Dr A Pendleton, FRCP (Ed), FRCP (I), FBASM, Consultant Rheumatologist,  Belfast Health and Social Care Trust

Our aim is to raise awareness of collagen disorders, and provide information on how to understand the diagnosis, and the appropriate treatment and management of these conditions, which from the relatively mild to the life threatening.

The event will provide a focus for patients and carers to improve their knowledge and understanding, and enable them to participate from an informed basis in their care, and in appropriate self-management strategies.

It will add to the knowledge base of clinicians and other health professionals and scientists by providing a world class up to date information and evidence session: and it will enable medical students to learn from internationally renowned experts not normally available in Northern Ireland.

CPD accreditation (2 external clinical CPD Points from the Royal College of Physicians) has been obtained for the event: Registration is required for Certification.

Please Click Here to Register Now!

Where?
Lecture Theatre, Medical Biology Centre, Queen’s University Belfast, Lisburn Road, Belfast

When?
18.00 to 21.00, 24 March 2015

Supporting our Torch bearers

NIRDP is delighted to be able to support members, family and supporters taking part in the London 2012 Olympic Torch relay coming to a street near you over the next few days.

Leigha Coade, who has Cystic Fibrosis, will be carrying the torch in Carrickfergus on Sunday 3 June, around 11 am. Leigha was chosen because she lives her life in such an inspirational manner, as demonstrated by her nomination: She has come through so many personal challenges this past few years and deserves to have a little light shone upon her. I know that she would love to do this and would love to play a small role in making 2012 Olympic history. She is a truly inspirational young lady who, having seen some of her friends lose their battle to this illness, carries on and faces life with strength and determination. She is my hero. Life for someone with C.F can be very lonely and Leigha knows more than anyone how that feels yet she continues to smile and pick herself up and soldier on when most people would have given up long ago. Please give her an opportunity to do this as life for us is about creating memories because one day that may be all I ever have left of her. I promise she won’t let you down and I know you will give her a focus and a reason to carry on the battle to make it through another year.

On Tuesday 5 June, the torch will be carried in Banbridge by Robbie Crouch, whose mother in law died last July from Progressive Supranuclear Palsy. Robbie was nominated because of his contribution to student and youth sports in NI for over 15 years.

Leigha, Robbie and their families are very supportive of NIRDP- now we get a chance to cheer them on!

Leigha: Sunday 3 June, Carrickfergus, 10.45am approx

Robbie: Tuesday 5 June, Banbridge, 5.45pm approx

Come prepared to make a noise, wave, and gather together to support our supporters!

NIRDP- we are stronger together.

Numbers of NIRDP t-shirts are very limited, so if you have a t-shirt/ hat/ banner from an individual rare disease group, please do bring that along. We’re hoping to be very visible!

Stronger Together

Over a thousand people, holding hands across the River Foyle. Radio, local press, YouTube video. Families, volunteers, the mayor and a jazz band. A fun day with activities. There was even sunshine.

What was it all about?

To raise awareness of the charity Shine, and to fundraise and support people living with the conditions Spina Bifida and/or hydrocephalus.

Those of us living and working with rare disease know that we can’t do everything ourselves; we need support, help, and even just a listening ear.

That’s why NIRDP exists. Join us or contact us. Help us to support each other.

We are stronger together.