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

NIRDP gets out and about

The pupils and staff of St Colman’s Primary School, Lambeg, helped raise £300 for NIRDP, by having an Olympic Torch Relay in school this week.

Before the event, the school had given each family information about NIRDP. One of our members, Fiona McLaughlin, spoke to each class about rare disease and how NIRDP works.

All children and staff got to carry the torch, under the watchful eye of teacher Robbie Crouch, NIRDP supporter and Olympic torchbearer.

There were many smiles and much laughter. The children really had fun with various styles of carrying- from over the shoulder like a bag of coal, to dancing, balancing with crutches, held high over the head, even a regal wave or two. Teachers, classroom assistants, maintenance and canteen staff- everyone had a turn and a big smile.

Thanks to everyone at St Colman’s for the time, and the fantastic support for NIRDP.

NIRDP Planning Day: 14 June 2012

About our Planning Day:

WHY PLAN?

The aim is to identify what we want to achieve, and to build our Action Plan for the next 3 years.

To do this, we need the ideas, skills, knowledge and experience of as many Members as possible!

WHEN AND WHERE?

On 14 June 2012, from 10 am to 3pm;

In the Lough Neagh Discovery Centre at Oxford Island: that’s just off the M1, at the Lurgan exit (Junction 10)

If you would like to be there, please e mail Sarah (sarah.mccandless@hscni.net) or phone her on 0800 917 0222

 

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!