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RARDTAC: Raising Awareness of Rare Diseases Throughout All Communities

We are delighted to share the news that we have received local council funding (THANK YOU community development funding team, Ards and North Down Borough Council) for a series of events under our RARDTAC banner.

We are delighted to share the news that we have received local council funding (THANK YOU community development funding team, Ards and North Down Borough Council) for, “RARDTAC: Raising Awareness of Rare Diseases Throughout All Communities” as a series of local events.  This novel exploratory project will be coordinated by Dr AJ McKnight & Mr Samuel Robinson, hosted at multiple venues within the Ards and North Down Borough Council area.

Although individually rare, collectively rare diseases affect a significant portion of our community – with 1/17 individuals affected by at least one rare disease.  This funding application was a direct result of engagement with our local community (there are >9,400 individuals affected by rare diseases in ANDBC geographical area (based on data from NISRA) and more than 1,000 responses to our Northern Ireland Rare Disease Partnership - Queens University Belfast consultations) and their repeated requests to hold more ‘rare disease’ events in our local community

A rare disease is defined as ‘a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000 and requires special, combined efforts to enable people to be treated effectively’. 

  • The majority of individuals with rare disease(s) describe,feeling isolatedandunsupported”.
  • >80% of individuals report accessing relevant information is difficult.
  • Getting help can be a long struggle for patients and their families.

Cumulatively, rare diseases affect more than 106,000 individuals in Northern Ireland, yet more than half of rare diseases do not have a specific support group where individuals can seek support.  In 2018, in collaboration with QUB and NIRDP, our local Mayor (Councillor Robert Adair) hosted a reception in Bangor castle to help raise awareness of rare diseases – the room was filled to capacity and we received more than 80 thank-you notes from that day.  NI is geographically isolated from the rest of the UK – more so in rural areas – so it is essential to ensure that our community in Ards and North Down have equality of access to relevant, helpful information and communication. In 2019 Queen’s University Belfast’s rare disease team and NIRDP joined forces with local businesses to host a ‘RariTea’ in Greyabbey to promote awareness of rare diseases, to highlight the isolation that is often faced by individuals living in rural communities, and to ask our local community what they wished to help them within our Ards and North Down Borough Council area (Community Wishes are here).  People asked for more local events, peer support, better communication with healthcare professionals, and information about available services among other things.  This project is direct result of community requests.

We wish to deliver a new local project aimed at helping individuals living and working with rare diseases within our local council area as an exploratory program for more effective rare disease engagement.  Facilitating empowerment, we plan to have external speakers sharing their experiences and expertise on (1) improving communication with healthcare professionals, understanding common jargon, how to get your points across clearly, (2) available local services such as complementary alternative therapies accessible on the NHS, educational support, housing adaptations, wheelchair information etc, and (3) building a longer-term peer support network with our local rare disease community.  For this project we will include individuals affected by rare diseases in our local Ards and North Down Borough (BT18-BT23).  Events will be widely advertised on social media, in print media, local health centres, and through organisations that can reach individuals who are socially isolated due to their rare condition.

This project encourages and promotes health and wellbeing by providing an opportunity to support individuals living with rare disease(s).  We will help break down socially isolating barriers promoting an inclusive community; research has shown that improved community engagement can help improve depression and anxiety.   Empowering individuals by providing knowledge and relevant information, or even knowing it’s OK to ask for help, can significantly reduce stress levels and therefore promote wellbeing.  We’re working alongside health services and local providers to support earlier diagnosis of rare diseases.  We are keen to help individuals live as active and health a life as they choose.  The peer-support from this project has the ability to reduce social isolation on a long-term basis having a real impact on serious concerns for this community around poor mental health. 

 

Our first meeting, focused on living with a rare disease, is organised for 9th December 2019 - more details here

With the second meeting focused on supporting carers on 16th January 2020 - more details here

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