Get Involved

Calling New – Board Member/ Trustee

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. Email for more information.

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
  • Finance
  • 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


Thank you for considering a donation to the Northern Ireland Rare Disease Partnership.

As a small local charity every penny donated will be spent locally here in NI to help the ‘1 in 17’ people who live with a rare disease in Northern Ireland.

At the moment we are in the process of updating our online donations system.  We apologise for the inconvenience but in the meantime donations can still be made by contacting


Want to fundraise for the Northern Ireland Rare Disease Partnership?

Contact Edel on email and we will be happy to support you.

Anything at all goes… but some ideas below to give you inspiration

Why not try?

  • a Bake Sale
  • a Sponsored Anything (walk, climb, silence, …)
  • Choosing us as a Charity of the Year for your work, school, sports association or social group
  • a Raffle
  • Gifts in Lieu (ask for donations to NIRDP instead of receiving Christmas or Birthday presents)

Don’t forget virtual fundraisers can be a great way to raise funds too – such as:

  • a virtual quiz night
  • a virtual pay as you sing karaoke
  • A virtual talent show

Or why not join in our very own Raritea Campaign.

A Raritea is a gathering of people (face to face or virtually) coming together to find out more about rare conditions, over our favourite cuppa and more importantly, we want to encourage everyone to have some fun and raise some funds along the way.

click on  RariTea to find out more

Finally some other simple ways to help.

Amazon Smile – if you shop on Amazon this is a simple and automatic way for you to support your favourite charitable organization every time you shop, at no cost to you. Just add Northern Ireland Rare Disease Partnership as your favourite charity and we will benefit every time you shop.

Give as You Live  – Give as you Live is an award-winning fundraising platform for UK charities.  This scheme helps people raise money through their everyday online and in-store shopping, as well as make direct donations and create fundraising pages.  Again consider adding Northern Ireland Rare Disease Partnership as your chosen charity.


We are actively seeking volunteers to help us with our work in Northern Ireland – so whether you have a few hours a month or even a year to volunteer please email Edel at to express your interest in getting involved and we will be in touch to discuss and make a plan.