NIRDP Family Fun Day and AGM: 24 October 2015

Save the Date! It’s the NIRDP’s Family Fun Day and AGM, on 24 October from 2pm to 4pm, in the Maldron Hotel, Airport Rd, Aldergrove, BT29 4ZR (That’s right beside the International Airport!)

There will be fun for all, with flower arranging demonstrations, face painting, a raffle with fantastic prizes; and we’ll hold our AGM as well, so you can hear what’s been happening and what is planned for the incoming year.

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NIRDP’s Newry Mourne and South Down Group Meeting 24 September

NIRDP’s Newry Mourne and South Down Group will meet this Thursday, 24 September, from 7pm to 9pm in the Mourne Country Hotel.

The Guest Speaker will be Geraldine Maguire, Assistant Director  from the Southern Trust; and we hope that it will be an informative and constructive meeting..we are stronger together!

Please contact Fionnuala, (e mail: for details..

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Rare Disease and Research Seminar Programme: Understanding and Managing Behavioural Changes in Huntington’s Disease

The Programme of Rare Disease and Research mini Seminars, bringing internationally recognised experts and senior NI Clinicians together to improve practice, kicks off on 17 September at 5.30 pm in the Postgraduate Medical Lecture Theatre at Belfast City Hospital, Lisburn Road, Belfast, BT9 7AB.

Errol Walsh from HDANI, whose step daughter Rachel suffered from HD, will give the family perspective; and Prof. Jane Paulsen, from the University of Iowa, will give the keynote address on what her research has shown about understanding the behavioural changes in HD, and how best to manage these.

Dr Seamus Kearney, Consultant Neurologist at the Belfast Trust, will be setting the Northern Ireland scene, and Sorcha McGuinness, Executive Director of HDANI, will set out the Patient Organisation contribution, leading to a Panel discussion about how research findings on HD can be used to change clinical and social care practice, improving outcomes for all those affected by HD.

There’s a food and drink reception at 5.30; so please use the link below to Registerincluding giving any dietary or access requirements – so that we can make sure everyone is catered for!

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NIRDP on the radio!

Fionnuala and Kerrie, two of NIRDP’s Members, were on Radio Q 100.5 South East this morning, talking to Tom Kelly about rare diseases and about the need for better information and support. We are reaching out to people in the Newry, Mourne and South Down area- the new Forum will be meeting in September, so spread the word, and get in touch now at for details.. Thank you, Q Radio, and well done, Fionnuala and Kerrie!

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NIRDP’s South Down Group

First meeting 7 pm, Thursday 2 July, in the Mourne Country Hotel

Aim: Our aim in establishing this group is to provide support to people with rare diseases, their families and their carers, and to plan activities of interest to both adults and children.

We know that many people living or working with rare disease in the South Down area currently have limited access to support, including information. We include people with the condition(s), their parents, spouses, siblings, friends and other family members, as well as health care professionals who are able to share and learn with us.

Many are very isolated, and feel very alone, living with conditions such as Ehlers-Danlos or Hypermobility Syndrome, Vasculits, Behcet’s Syndrome, Huntington’s Disease, or PSP (Progressive Supra Nuclear Palsy).

Anyone affected by or working with a rare disease is very welcome to attend the meeting on Thursday 2 July, at 7pm in the Mourne Country Hotel

We want to reach out to as many as possible, to see how together we can make life better, by improving access to information, and by identifying and advocating for needed improvements to services for people from South Down.

If you would like to come, please email;

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