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 info@nirdp.org.uk for details.. Thank you, Q Radio, http://www.qradionetwork.com/q-south-east/ 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 events@nirdp.org.uk;

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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.

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Palliative Care: The Lets Talk About Survey

The All Ireland Institute of Hospice and Palliative Care’s “Let’s Talk About” care survey is gathering experiences, good and bad, about palliative care in the Republic of Ireland and Northern Ireland.

Many people with rare diseases live with a serious or progressive medical condition from which they are unlikely to be cured and which may limit or shorten their life.

Taking a palliative care approach helps to give people the best possible quality of life. You can help improve policy and services by sharing your real life experiences in this survey. Palliative care is an essential element in supporting all those living with serious and progressive conditions to live life to the fullest possible extent.
If you have had an experience of palliative care, good or bad, please take the time to complete the AIIHPC’s survey, anonymously, so that your experience can help build better provision for the future. Further information, and the survey, is available on line at http://aiihpc.org; or contact Cathleen Mulholland at cmulholland@aiihpc.org or phone 00 353 (0) 1 491 2948

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