October 2014
Living Well With Vasculitis- 2014 Annual All Ireland Vasculitis Conference
'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 >
Find out more »May 2015
First NI Vasculitis conference, Burrendale Hotel, Newcastle, 24th May 2015
Vasculitis Ireland Awareness support group to date, by Julie Power Vasculitis the basics, by Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James' Hospital, Dublin 'How we can help ourselves', Self Help and Symptom Management groups available in NI, by Tricia Bowers Arthritis Care 'How to get the most from our appointments and help ourselves'- Kieran Brogan, Patient Advocate, Peer Support Worker Pain Management, Patricia Mc Crystal, Chartered Counselling Psychologist- Specialist in Persistent Pain, Southern Health and Social Care Trust 'Renal Patient View and the Importance of Registries’ Dr Damian Fogarty, Consultant Nephrologist Belfast Health and Social Care Trust with special interest in research. Dr Carolyn Harper, Executive Medical Director/ Director of Public Health – HSC- Public Health Agency, Informal Talk about Commissioning and then discussion about what would make the biggest difference for people in managing their condition. In the months following this last talk, meetings were held to assess possibility of setting up a tertiary Vasculitis service that would avoid crisis management by having people experiencing difficulties referred by their Rheumatologist/Nephrologist/Immunologist to a specific team, who would recommend appropriate care and if necessary see the person. This service was agreed, along with plans to provide education re vasculitis to the healthcare professionals via an online system. However, due to staffing difficulties and delays in setting up the eReferral system, this is still not operational. Watch this space for updates.
Find out more »October 2015
Fourth All Ireland Vasculitis Conference
All Ireland Vasculitis Conference 3rd and 4th October 2015Join us at our annual conference to share experiences and learn from experts in the field of Vasculitis.The agenda includes Questions and Answers with a Panel of Expert Consultants,chaired by Derick Mitchell IPPOSI CEOPsychological Impact of Living with and Managing Chronic IllnessMr Michael Kelly IKDFatigue in Vasculitis – latest research by Dr Neil Basu, Senior Lecturer & Honorary Consultant Rheumatologist, University of Aberdeen, European Vasculitis NetworkVasculitis Ireland Awareness AGMMindfulness and Stress Management DetailsThe Royal Marine Hotel, Dun LaoghaireRegistration from 11am on Saturday,Register online at https://vasculitis.eventbrite.co.ukWhoAnyone interested in learning more about Vasculitis including Healthcare ProfessionalsCost€50 per person (€80 for 2) includes lunch and buffet dinner on the SaturdayFor more details contact Julie Power at 02844 842889
Find out more »February 2016
Rare Disease Day
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
Find out more »Rare Disease Day Reception at Stormont
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: Registration17.30.to 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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