First NI Vasculitis Conference, 24th May 2015, Burrendale hotel, Newcastle

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 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, […]

New Vasculitis Patient buddy app being developed

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We are at the exciting stage of designing a new app with PatientmPower, Clinicians and researchers in Trinity Kidney Research and  Vasculitis UK. This app will be used to help us manage our symptoms, record our health over time and hopefully help us identify triggers which cause flares. It is at the very early stages of development and is currently […]

National Scleroderma and UK & Ireland Vasculitis Meeting, Venue Clarion Hotel, Cork City Wednesday December 7th 2016

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We were fortunate to have 4 members attend this meeting, Patricia Ryan, Seamus Beausang, Ann O’ Brien and myself. The meeting on Wednesday was very detailed and intense and the following is a synopsis of the content.
Evolving spectrum of Scleroderma morbidity and mortality – Dr Bernie Lynch, Galway University Hospital talk of Royal Free Scleroderma group for information and latest research showing that posterior tibial nerve stimulation may help in the symptoms of faecal incontinence.
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World Orphan Drug Congress

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World Orphan Drug Congress, Brussels, 15th-17th November 2016
On 15th November, I travelled to Brussels to represent Vasculitis Ireland Awareness at the 7th World Orphan Drug Congress in Europe. I secured a free place along with a colleague from the Northern Ireland Rare Disease partnership (James Cauldwell, Rare Cancers support group) and we travelled together to find out more about this area and how we as patient groups could expedite access to these important medications.
Perhaps at this stage it would be good to define Orphan drugs – according to European Medicines Agency they are ‘for the diagnosis, prevention, or treatment of a life threatening or chronically debilitation condition that is rare (affecting not more than 5 in 10,000 people in European Union) or where the medicine is unlikely to generate sufficient profit to justify research and development costs. […]