Taking Action

 

A rare condition is a chronic, disabling condition which affects 1 person in 2000 or fewer. At present, there are over 7,000 known rare conditions worldwide.

In Northern Ireland it is estimated that over 100,000 people, or 1 in 17, are impacted by rare conditions.  This is a population the size of Derry/Londonderry. The majority of these people have no condition specific group to support them within Northern Ireland.

At the Northern Ireland Rare Disease Partnership we work to enable people who live or work with rare or hard to diagnose conditions to connect, advocate, educate and innovate in partnership with each other by:

Advocating & Influencing:

We work to advocate and influence on our members’ behalf, including through representation on the Northern Ireland Rare Disease Implementation Plan Steering Group, chaired by Northern Ireland’s Chief Scientific Officer, Professor Ian Young, and on the UK Rare Disease Forum, chaired by the Deputy Chief Medical Officer for England; by participating in the HSCB’s Neurological Conditions User Reference Group. We work with elected representatives to raise awareness and understanding of rare disease and its impacts, and to build support for legislative and policy changes.

Connecting and Supporting:

Our motto of ‘Stronger Together’ captures our ethos—we connect, we link, we work together to ensure that no one is disadvantaged by the rarity of their condition.  We welcome and work closely with partners in condition-specific charities and support groups, medical organisations and in academic research. We are represented in national and international organisations to build our networks, share knowledge, and strengthen our experience and resources.

Informing and Educating:

A major part of our work is about informing and educating, using our networks of health and social care professionals, member organisations, and patient and carer members- “experts by experience”.  We offer opportunities to participate in training and research programmes, working in partnership with the Public Health Agency and others to provide lectures and conferences on specific areas and conditions.  We are working with all our partners to guarantee that accurate, reliable information is easily available to clinicians and health care professionals, and to patients and families, through our own website and social media platforms, and by participating in developing other training and information initiatives.

Innovate and Reform:

In everything we do, we seek to bring about improvement. We act on current research findings to help generate a positive impact within the lives of people living with rare conditions.  The Health and Social Care system in Northern Ireland is facing huge challenges, but there are huge opportunities too, and we are working to ensure that these are grasped and that those living and working with rare diseases benefit.