Rare Disease Virtual Support Hub

Please don’t struggle alone, reach out – we are #StrongerTogether.

We offer a virtual support hub to provide information, support and guidance to people living with a rare disease in Northern Ireland

Reach out to Edel Rogan, the Community Activator or Caroline McFerran, the  Community Navigator no matter what your query – they can help with:

  • More information about your diagnosis,
  • Emotional support and a listening ear,
  • Practical support like benefits advice
  • Obtaining aids and equipment
  • Accessing mental health & wellbeing support near you.

Email info@nirdp.org.uk or telephone 0770 447 6929 / 0770 447 6930

Our People – Northern Ireland Rare Disease Partnership (nirdp.org.uk)

 

 

With the kind support of The Rank Foundation

 


Background

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.

The knowledge and feedback gained from the pilot project allowed us to establish the next phase of the project.  Due to the restrictions of the pandemic we moved to an online service which is now called the virtual support hub.