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October 2014

Living Well With Vasculitis- 2014 Annual All Ireland Vasculitis Conference

October 4, 2014 @ 11:00 am - October 5, 2014 @ 12:00 pm
The Royal Marine Hotel, Marine Road
Dublin, Ireland
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'Living Well with Vasculitis' A weekend conference with talks from Prof Mark Little, Consultant Nephrologist, Beaumont, Tallaght and St James’ Hospitals, and Dr Eamonn Molloy, Consultant Rheumatologist, St Vincent’s Hospital. Both are Specialists in Vasculitis, with a wealth of experience between them,  and are involved in Vasculitis Research. They will inform us of current treatments and updates in research.Dr David Edgar, Consultant Immunoligist in the Royal Victoria Hospital, Belfast has also agreed to speak on setting up a network of healthcare professionals involved in treating people with Vasculitis in NI. We intend having another consultant to talk about pain management, and more talks/information on understanding our blood tests, fatigue management, benefits and support available, and the results of our recent short survey  We also plan to have a closed carers group for carers only. This will be a great opportunity to  to meet others in a similar situation in a relaxed atmosphere.    Saturday 4th  The event will start with Registration from 11am, and a chance to look at available useful information This will be followed by a lunch of soup and sandwiches at 12noon Talks and question and answer sessions will run from 1pm to 5pm with a short break for tea and coffee.  A three course dinner will be served at 7pm, this provides an informal setting to meet others in a similar situation.   Sunday 5th 10am Talks and Information 12noon Close You can purchase you tickets on line HERE >

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February 2016

Rare Disease Day

February 29, 2016 @ 10:00 am - 3:00 pm
Riddle Hall, 185 Stranmillis Road
Belfast, BT9 5EE United Kingdom
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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 NOWThe 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 EMPOWERMENT10.00 to 10.30 Registration10.30 to 10.35: Welcome – Christine Collins, Chair, NIRDP10.35. to 10.45: Keynote Address: Rare Disease and HSC Transformation- Dr Michael McBride, Chief Medical Officer, Northern Ireland10.45 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 Lead11.55 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 Service12.30 to 12.45: Round up of Panel Sessions: Reflections13.00 to 13.45 Lunch: INFORMATION STANDS, INCLUDING RNIB; ACTION FOR HEARInG LOSS; 10K VOICES; AND PATIENT ORGANIZATIONS13.45 to 14.00: NI Medical Genomic Centre Dr AJ McKnight, QUB14.00 to 15.15: Seizing the opportunity “POLICY INTO PRACTICE” interactive workshop David Finegan, NIRDP15.15 tO 15.30 : CONCLUSIONS AND CLOSE

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Rare Disease Day Reception at Stormont

February 29, 2016 @ 5:00 pm - 7:00 pm
The Long Gallery, Parliament Buildings, Stormont
Belfast, BT4 3XX United Kingdom
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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 Stormont17.00 to 17.30: 17.45: Welcome and introduction: Kieran McCarthy, MLA; Dr Vivienne  McConnell, Clinical Lead for Medical Genetics17.45 to 18.00: Alastair Kent OBE: The role of empowered patients in oversight18.00 to 18.10: Minister Simon Hamilton MLA: Working together to provide high quality care for people with rare diseases18.10-18.15: Thanks and Close: Christine Collins, Chair NIRDP18.15 to 19.00: Photo Opportunities and Networking: Refreshments

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October 2019

2019 All Ireland Vasculitis Conference

October 4, 2019 @ 5:00 pm - October 6, 2019 @ 2:00 pm

This will be our eighth annual All Ireland vasculitis conference and this year, we are holding it in the seaside town of Newcastle, Co. Down. Clare Lodge is a registered House with Tourism NI and provides accommodation for up to 52 people in a mix of twin, double and family size rooms. All have ensuite facilities, free Wifi, flat screen televisions and tea and coffee making facilities. All rooms are wheelchair accessible with a lift for ease of access.The premises also boasts a large dining hall/indoor activity space, lounge and an outdoor seating area with a full view of the beach. In addition there is a fully-functioning kitchen and all meals will be provided - please let us know in advance of any dietery requirements. Free secure parking is available on site. We have been able to secure the entire facility for the weekend for a reasonable rate. We will have guest speakers from the Vasculitis world providing current information on treating and managing vasculitis, which will be confirmed nearer the time. There will be opportunity to mix with others living with vasculitis and those who treat us, share suggestions, have breakout sessions and to relax with beautiful promenade walks or ice cream!. We have venue from the afternoon of Friday 4th, so people can check in any time after 4pm and evening meal will be provided. The conference will start on Saturday morning from 10am-5pm, and then Sunday from 10am to noon. The nightly price includes accommodation, meals and conference costs. 2 nights single room occupancy accommodation  £120 2 nights shared occupancy accommodation £100 pp 1 nights accommodation £75 Conference only (refreshments + lunch included) £35    

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