The Stronger Together project is a 2-year pilot project, funded by the Big Lottery Fund, which will enable people who live or work with rare conditions to connect, advocate, educate and innovate in partnership with each other and others. The project provides peer support, advice, volunteering and networking opportunities and will work to build capacity within the rare disease sector, helping to identify areas for future development.
The project was a direct response to public demand from a series of communications workshops held across the whole of Northern Ireland in 2017 where discussions focused on improving access to information and support for those affected by rare conditions and so enabling positive change to those affected by rare disease.
As a result of this project we currently employ two part-time members of staff who offer support across all of the health trust areas; Ian Parsley and Tanya Boggs.
Ian and Tanya provide practical advice, signposting, peer support and volunteering opportunities and endeavour to improve upon networking opportunities, partnership engagement and seek to influence relevant policy.
Our Project Officers work to build up knowledge and support in their areas, linking with health & social care and other voluntary organisations and are the first points of contact for people living and working with rare disease.
Tanya Boggs is our project officer covering the Western and Northern Trust areas, to contact her email Tanya@nirdp.org.uk and Ian Parsley covers the Southern, South Eastern and Belfast areas, to email contact Ian@nirdp.org.uk