Rare Disease Virtual Support Hub
NIRDP offer a Virtual Support Hub providing information, support and guidance to people living with a Rare Disease in Northern Ireland .
For any query in the first instance either email firstname.lastname@example.org or telephone 0770 447 6929 or 0770 447 6930.
Please don’t struggle alone reach out we are #StrongerTogether.
The Rare Disease Virtual Support Hub will support no matter the query – whether you need help:-
- to find more information about your diagnosis,
- with emotional support and a listening ear,
- for practical support like benefits advice
- to obtain aids and equipment
- to access mental health & wellbeing support near you.
Do reach out to the Virtual Support Hub led by Edel Rogan Community Activator NIRDP and Caroline McFerran Community Navigator NIRDP.
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.