The summer holidays are still in full swing, but the NIRDP volunteers are keeping as busy as ever.
Some have been in Whitehall, involved in the development of the UK Rare Disease Plan. The Plan still needs a lot of work, but we also hope to be involved in the development of the NI implementation plan- turning the UK policy into something that works here in Northern Ireland.
We are meeting with Minister Poots on 22 August to discuss progress on the UK Plan, and our vision for the NI implementation plan, including cross border aspects.
We are developing an engagement exercise survey to capture the reality of living with a rare disease in NI. This is being carried out in partnership with the Public Health Agency and the Health and Social Care Board, so that needs can be understood and service delivery informed. The survey will be run during the autumn, and will be a chance to ensure commissioners understand the real impact of rare disease on an individual and the family.
Members in the North Down constituency meet with Jim Shannon, MP, in July. Mr Shannon has been supportive of rare disease issues, and is proposing a Westminster Hall debate on the UK Plan. Westminster Hall debates are 30 minute or an hour debates on an issue raised by an MP- a Minister responds and others can say things too. The more MPs show interest and support for this, the better- so please contact your MP and ask them to support Jim’s initiative. Any UK charities/support groups, add your weight nationally!
We are planning an event for the Long Gallery in Stormont on Monday 13 January– a chance to launch the results of the survey, and give all the support organisations/ charities a chance to be there and connect with MLAs. we can use this to show that ‘rare’ doesn’t mean ‘small’ or ‘unimportant’!
And then there’s the initial planning for Rare Disease Day 2014! We’ll be holding this event in Riddel Hall on 28 February, and the focus will be on person centred care. Save the date!!
All of the work of NIRDP is carried out by volunteers, and we are stretched. Do you, or any of your family, friends, colleagues, have skills, experience or time that you could share with us? We have a lot of work to do if we are to develop a sustainable organisation to continue to advocate, educate and innovate on behalf of those with rare disease in NI. Please contact us if you’d like to get involved – we need you.