Get Involved


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.

Donate (


Want to fundraise for NIRDP, Contact Edel on email

Why not try? Bake Sale, Sponsored Anything (walk, climb, silence, …) or arrange a virtual event.

Choosing NIRDP as a Charity of the Year for your work, school, sports association or social group.

Gifts in Lieu (ask for donations to NIRDP instead of receiving Christmas or Birthday presents). Or hold a RariTea event RariTea – Northern Ireland Rare Disease Partnership (


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.

Fundraising – Recent Events

Maggie’s Call: Carnlough family shine a light on rare diseases and boost charity.

The Partnership would like to thank the Black family for considering others in this time of great loss, and also to the Mothers and Others Group at St Ergnat’s GAC for their tremendous fundraising effort. Every penny raised will be used to further the charity’s vision and provide support to the ‘rare’ community. 

 As the morning of December 1 2021 unfolded the Black family couldn’t begin to imagine the tragedy that was about to occur.  For their beautiful five-year-old daughter Maggie, the girl who had a smile for everyone, was taken from them by an undiagnosed rare condition…Addison’s Disease. Maggie’s mum, Sheenagh comes from Moneyglass outside Toomebridge and the community there,led by the Mothers and Others group from St Ergnat’s GAC, rallied around to show their support. A bake sale was organised to raise money for the NIRDP.

The partnership can not thank the Black family for considering others in this time of great loss. To The full article here: NorthernIrelandWorld

Club Port Mór 146 Miles

Club Port Mór is fundraising for O’Neill’s GFC to provide much needed funds for development and ongoing running costs and kindly aiming to raise awareness of the NI Rare Disease Partnership (NIRDP) who will receive 10% of funds raised. Completing the 146 miles journey, well done to all involved and a huge thank you for everyone at NIRDP.

Crowdfunding to Help fund O’Neill’s GFC An Port Mór and Rare Disease Partnership NI. on JustGiving

Finally some other simple ways to help.

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

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.

Thank you to our funders