We have taken the learning from the pilot project and developed a new, more targeted support Phase II Stronger Together programme. We are delighted to now have Edel Rogan and Caroline McFerran in post.
Edel Rogan, Community Activator. Edel will specifically look at identifying what gaps exist, particularly in relation to supporting our mental health as we move through our rare disease journey. Contact Edel at firstname.lastname@example.org
Caroline McFerran, Community Navigator, Caroline will be the first point of contact for anyone with a rare disease query or comment. She will help you to navigate through the maze of support organisations that exist and help direct you to the most appropriate ones. Contact Caroline at email@example.com
Watch this space for more details on the official launch soon!
With the kind support of The Rank Foundation
The Stronger Together pilot was a 2-year project, funded by the Big Lottery Fund, which ran from 2017-2019. The project enabled people living or working with rare conditions to connect, advocate, educate and innovate in partnership both with each other and more broadly in the rare disease community. The project aimed to provide peer support, advice, volunteering and networking opportunities and to 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.
Two part-time officers provides practical advice, signposting, peer support and volunteering opportunities and endeavour to improve upon networking opportunities, partnership engagement and seek to influence relevant policy. Building up knowledge and support in their areas, linking with health & social care and other voluntary organisations they were the first points of contact for people living and working with rare disease.