*Closes 24th November*

The Northern Ireland Rare Disease Partnership (NIRDP) are currently looking for trustees to join our board.

NIRDP is a charity which works to represent anyone living with a rare condition. Join us as a Trustee and help make a difference to the 1 in 17 across NI affected by Rare Disease.

NIRDP is an umbrella organisation and we work to represent anyone living with a rare condition and work closely with a range of individual rare disease organisations based locally. Our vision is to improve the quality of our members’ lived experiences and we do this by advocating, connecting, educating, innovating on behalf of the community and supporting individuals, families and carers living with rare conditions.

The Partnership is a passionate advocate for the community and operates in a diverse and ever-changing environment. The organisation wishes to remain proactive and forward thinking in order to remain relevant to our members and maintain our high level of partnership working.  The Partnership is looking to balance the composition and skill set of its Board of Trustees and is inviting expressions of interest to fill current vacancies, looking for key skills and expertise in one or a combination of the following areas:

  • Marketing/ branding and communications
  • I.T.
  • Legal support
  • Income generation / fundraising
  • Organisational Development
  • Training

You do not need any previous experience of being a Trustee.

Our trustees currently come from a range of backgrounds to include, individual rare disease group representatives, education, health, research, law, finance and the private sector. The role is interesting and rewarding, giving you the chance to exercise existing skills and develop new ones. Being a trustee is an opportunity to gain valuable board-level experience.

The Board has overall responsibility for the strategic direction of the Partnership and helps to promote our activities across Northern Ireland. The successful candidates will take a hands-on role in determining strategic options in a constructive way and help guide the future development of the Partnership.

The Board meets quarterly online, usually in the mornings and each trustee is also a member of one of at least one of the Board’s sub-groups.  Business between meetings (email correspondence/conference calls) will typically amount to less than one hour per week on average.

In line with our Equality & Diversity Policy we are keen to achieve a more diverse Board and particularly welcome applications from under-represented groups, in particular people from ethnic minorities, people with disabilities, young people (18+) and men.

The closing date for expressions of interest is Wednesday 24 November at 4pm.

Please contact our secretary Julie Power on julie@nirdp.org.uk for more information and to apply as above.