Foyle & NW forum

We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area.

Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and WHSCT to support people living or working with rare disease. She comes to us with many years nursing experience at Great Ormond Street Hospital. Tanya can be contacted at tanya@nirdp.org.uk  07927 170 138 and will be working 18 hours per week.

We welcomed Helen, Jane and Ashleen from QUB, all of whom are working in the area of rare disease- education, communication and genetics.

Gina updated us on the work of the Our Children’s Voice group- we’re looking at how NIRDP and OCV can work together to support families in border areas.

Carol reported back from one of the WHSCT meetings on savings/ cuts. The financial shortfall is less significant now, but there’s always negotiations to be had. We encourage members to get their voices heard and participate in discussions.

Creea Convery from MND Association raised the issue of challenging referrals from GPs to specialists- either not soon enough, or with inadequate information for the neurologists to triage appropriately.

Neurological Care Co-ordinator, Tracey Magowan, talked about the role of care advisers based at neurology clinics. They support patients and families to navigate the systems, sign post, and provide localised information and fact sheets. Another care adviser is being recruited to cover clinics at Altnagelvin.

We had another chat about the needs of patients with EDS. NHS England are working on a care pathway. NIRDP are interested in developing a piece of work looking at the patient journey. This may form part of the peer support work during the Stronger Together project. Watch this space!!

We agreed to gather again for a pre Christmas cuppa and chat at the City Hotel on 14 Dec, 11am.

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Stronger Together Project starts work!

 

Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry! 

Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as Tanya Boggs, our first “Stronger Together” Project Officer, starts work!

Fiona McLaughlin (NIRDP Chair) and Sandra Campbell (NIRDP Director and Foyle and NorthWest Rare Disease Forum Lead) welcomed Tanya; and started the process of building our “Stronger Together” Project, funded by a grant from the Big Lottery.

Our NIRDP vision is that no one is disadvantaged because of the rarity of their health condition. Stronger Together is a 2 year pilot project which will enable people who live or work with rare disease to connect, advocate, educate and innovate in partnership with each other and others (e.g. Department of Health; other Departments; other charities). The project will provide peer support, volunteering, networking and advice.

It aims to make the ideas put forward  in the Communications Workshops earlier this year, for improving accessibility to information and support into a reality; and so to make a positive difference to the way people affected by rare diseases live.

Come along to the  Foyle and North West Rare Disease Forum meeting in the City Hotel, Derry on Monday 6 November from 11am to 1 pm to meet Tanya and others, and to celebrate this first step on the road!

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ANNUAL VASCULITIS IRELAND AWARENESS ALL IRELAND CONFERENCE

Vasculitis Ireland Awareness are hosting their annual All Ireland conference on 28th and 29th of October in the Royal Marine Hotel, Dun Laoghaire.

This year will open with a patient panel, where attendees will have the opportunity to hear more about living with Vasculitis, from diagnosis through to management, comorbidity and the disease from the carer’s perspective, followed by a Consultant’s panel in the afternoon with specialists from Rheumatology, ENT and Orthopaedics.

Julie Power, Founder and Chairperson at Vasculitis Ireland Awareness says “The event will offer many opportunities for discussion about Vasculitis and will include information for attendees about recent developments in research as well as offering a chance to talk to the people involved. This is an ideal opportunity to meet others living with the same issues and to engage with the experts.”

The cost of the event is €45 with accompanying attendees paying €35 each. The cost includes lunch and refreshments on Saturday, after an evening of networking the event will close at noon on Sunday.

To register visit  https://vasculitis2017.eventbrite.co.uk/ and follow us on Facebook for updates Vasculitis Ireland Awareness, alternatively, if you would like more information about this topic, or the event please contact Julie Power at 02844842889 or email at julie@vasculitis-ia.org.

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Staff Vacancy: Project Officer (part time, home based)

We have recently been awarded funding by the National Lottery through the Big Lottery Fund for a 2 year pilot project, “Stronger Together”, which will work to build capacity within and across the rare disease sector and help to identify development areas for the future.

As a result, we currently have an new opening for a part time, home based member of staff, to cover the Southern, South Eastern and Belfast areas.

The Project Officer will build up knowledge and support in their areas, linking with health & social care and other voluntary organisations and will be first point of contact for people living and working with rare disease.

The project will provide practical advice, signposting, peer support and volunteering opportunities. It will also work to improve networking, partnership engagement and seek to influence relevant policy.

Information about the posts and the application process is available at Community NI

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NIRDP MOVING FORWARD AFTER A SUCCESSFUL RECRUITMENT PROGRAMME!

We were one of six delighted community groups across Northern Ireland celebrating a shared award of £1 million from The National Lottery this June, receiving a £112,124 share of this total fund to employ 2 part-time members of staff who will work on an outreach basis.

We have since had a very successful recruitment programme which took place in August with plans for the new project and recruits to begin in November.

The project will provide practical advice, signposting, peer support and volunteering opportunities. It will also work to improve networking, partnership engagement and seek to influence relevant policy.

Fiona McLaughlin, Chair of Northern Ireland Rare Disease Partnership comments “We are absolutely delighted to have this remarkable opportunity to provide the additional support that is so crucial to all our members. This is first for us in Northern Ireland and we are keen to ensure that this funding will make a real difference to families, carers, medical professionals and member charities as well as offering us an important opportunity to raise awareness at government level and beyond”

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