Just to keep you all informed- here are two of the rare disease related events which are coming up this month!
- The second All Ireland Neuromuscular Research and Information Sharing Day is being held in Riddell Hall, Belfast, on 16th May 2015. This event is co-hosted by Muscular Dystrophy UK and Muscular Dystrophy Ireland with registration starting at 9.30 am.
- Prof Francesco Muntoni will be discussing their clinical centre of excellence and translational research for the benefit of patients, including briefly updating on muscle disease genes and measures for trial readiness.
- Dr Ros Quinlivan is focusing on their new neuromuscular complex care centre (e.g. http://tinyurl.com/kx54rac) and transition.
- Prof Eileen Treacy from Dublin is providing an update from their National Clinical Programme for Rare Diseases, and Aoife Bradley, from the Northern Ireland Regional Medical Genetics Service will be discussing pre-implantation genetic diagnosis.
- Afternoon workshops will take place on Disability Sports and Independent Living, finishing the day with a LEGO fundraising event.
- A parallel, medically-focused discussion session supported by the NIRDP is available with our international experts as requested 2.00 pm – 3.30 pm.
Everyone is very welcome to attend all or part of the day; so please spread the word, and please do register to accommodate catering.
For further information and to register for attendance please contact Demelza at firstname.lastname@example.org
2. Vasculitis Ireland Awareness have organised the first Vasculitis Conference in Northern Ireland, on “Managing Vasculitis” in the Burrendale Hotel, Country Club and Spa, Newcastle, Co. Down BT33OJY, on Sunday 24th May 2015, 9am-5pm.
Topics discussed will include:
- Vasculitis- the Basics: Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin;
- How we can help ourselves: Self help and Symptom Management groups available in NI: Tricia Bowers, Arthritis Care
- How to get the most from our appointments: Kieran Brogan, Patient Advocate
- 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; and
- How to improve our Health and Well Being: Dr Caroline Harper, Executive Medical Director/ Director of Public Health, Public Health Agency NI
The cost is £27.50 per person, including lunch and refreshments.
There will be information stands on how to access help, benefits, aids and appliances, and information on courses available to help maintain and regain independence.
This event will be of interest to anyone interested in improving management of a long-term chronic condition.
Register online at https://managingvasculitis.eventbrite.co.uk
For more details contact Julie at 02844 842889
Watch this space for details on the forthcoming Ataxia UK Conference (Radisson Blu Hotel, Gasworks, Belfast; 20 and 21 June 2015); and on NIRDP’s own forthcoming events…