Northern Ireland Rare Disease Partnership

Cask for Kids -Fundraising Challenge
2025-09-29 08:00 - 2025-10-24 16:00 (Europe/London)
🌟 Support Children with Rare Conditions 🌟
Northern Ireland Rare Disease Partnership – Mental Health Project
Children living with rare conditions face unique and overwhelming challenges every day. Their needs go far beyond the medical – they deserve mental health and emotional support too.
📊 Children and Rare Diseases – The Reality
70% of rare conditions begin in childhood.
30% of children born with a rare disease will not live to see their 5th birthday.
These are not just numbers – they are children and families facing extraordinary difficulties.
💔 How Rare Conditions Affect Children
Children with rare diseases are among the most vulnerable in society. They may face:
Delayed diagnosis and complex medical journeys
Multisystemic disorders and comorbidities
Developmental delays and physical disabilities
Emotional, social, and cognitive challenges
Frequent hospitalisation and prolonged absences from school
These struggles impact the whole family, not just the child.
👨‍👩‍👧 The Hidden Impact on Siblings
Siblings of children with rare conditions are often overlooked, but the challenges they face are profound:
75% of young siblings help with their brother or sister’s care
50% consider themselves to be carers
50% say their mental health has been affected
60% say their parents can’t always attend school events because of their siblings’ needs
91% of older siblings (17–25) said their education was impacted
52% received no support at all
These children often miss out on “the ordinary” – time with friends, holidays, birthdays, or simply having their parents’ attention. They carry worries far beyond their years, including fears about their siblings’ future care.
💚 Why We’re Fundraising
We are raising money to provide group and individual mental health support for children affected by rare conditions. These sessions will give them safe spaces to share, heal, and grow stronger together.
This is part of the Community Challenge with Cash for Kids.
We keep every pound we raise.
The group that raises the most wins an extra £5,000!
🙌 How You Can Help
Every donation, big or small, makes a real difference. After donating, we’d love if you could also leave a photo or video support message – it means the world to the children and families we support.
Together, we can bring hope, resilience, and care to children living with rare conditions.
✨ Thank you for standing with us. ✨

Derry/Londonderry Power of connection Group
2025-10-08 14:00 - 16:00 | Ebrington Hotel, The Ebrington Hotel, 69-72 Ebrington Sq, Londonderry, BT47 6FA
Our community support groups, such as Derry/Londonderry, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer support, guidance, and signposting to help you navigate the challenges of living with a rare condition. What may feel rare to you is often a shared experience in our community, and you are not alone.

Armagh Power of Connection Group
2025-10-16 11:00 - 12:00, 2025-11-13 11:00 - 12:00, 2026-02-19 11:00 - 13:00 | Dobbin Street Community Center, 11A Dobbin St, Armagh, BT61 7QQ, United Kingdom
Our community support groups, such as Armagh, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer support, guidance, and signposting to help you navigate the challenges of living with a rare condition. What may feel rare to you is often a shared experience in our community, and you are not alone.

Omagh Support Group
2025-10-30 11:00 - 12:00 | Omagh Fire Station, 1 Killybrack Rd, Omagh, BT79 7DG, United Kingdom
Our community support groups, such as Omagh, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer support, guidance, and signposting to help you navigate the challenges of living with a rare condition. What may feel rare to you is often a shared experience in our community, and you are not alone.

Omagh Support Group
2025-11-19 10:00 - 11:00

Debra Local Connect - Belfast
2025-11-20 12:00 - 16:00 | Titanic Hotel,Belfast, The Titanic Quarter, 8 Queens Rd,, Belfast, Northern Ireland, BT3 9DT, United Kingdom
At these small events, you can join someone from our EB Community Support Team and other DEBRA members for tea, coffee, and conversation in a local community space. For our Belfast event this November, we’re excited to be hosting it at the Titanic Hotel, in the heart of Belfast’s Titanic Quarter.

Talk Money Event
2025-11-20 18:00 - 19:30 | Online

Derry/Londonderry Power of Connection Group
2025-12-01 00:00

Antrim Power of connection Group
2026-01-31 12:00 - 14:30 | Antrim Library, 10 Railway St, Antrim, BT41 4AE, United Kingdom
No matter what kind of zebra you are, you’ll be really welcome at the first Rare and Rarely Known conditions meeting in Antrim Library, 31st January, 12 noon – 2.30 pm. Come connect with the community! Event Link – https://fb.me/e/3ZFnrLCW5
Event supported by NI Rare Disease Partnership and Ehlers-Danlos Support UK

Omagh Support Group
2026-02-03 18:00 - 19:00 | Online
Our community support groups, such as Omagh, are here for anyone living with a rare, undiagnosed, underdiagnosed, or very rarely diagnosed condition. These groups provide a safe space to meet, share experiences, or simply have a conversation—even if you’re unsure what’s happening in your own situation. While we do not provide medical advice, we offer support, guidance, and signposting to help you navigate the challenges of living with a rare condition. What may feel rare to you is often a shared experience in our community, and you are not alone.
Please join this meeting through this link:
Omagh Support Group | Meeting-Join | Microsoft Teams

Rare Disease International Conference
2026-02-28 | Ebrington Hotel, The Ebrington Hotel, 69-72 Ebrington Sq, Londonderry, BT47 6FA
Dear Colleagues and Friends,
We are delighted to invite you to attend the Northern Ireland Rare Disease Partnership One-Day International Conference –
More Than You Can Imagine:
Rare Realities.
It is a unique opportunity to come together to explore current challenges, share knowledge, and strengthen collaboration within the rare disease community.

This Conference will bring together Individuals living with rare diseases, patient organisations, families, clinicians, researchers, policymakers, industry partners, health & social care workers, educators, government, and advocates from Northern Ireland and beyond. Through a programme of expert speakers, discussions, and shared experiences, the event will focus on improving understanding, visibility, and outcomes for those affected by rare diseases.

Attendees can expect insightful presentations on key developments in rare disease policy, care pathways, research, and lived experience, as well as opportunities to connect with others. Whether you live with a rare condition yourself or support the community in a professional or voluntary capacity, your voice and presence are vital to this event.

We strongly encourage you to join us for this pivotal day of learning and connection; your participation is key to driving the change we want to see.
Date, location, and complete programme details, along with registration, are available via
Eventbrite.

We have negotiated a discount rate with the Ebrington Hotel for £185.00 per night, single/double occupancy. If you are booking, please mention the Conference to avail of the special rate.
The Ebrington Hotel
We look forward to welcoming you.

Kind regards,

The Northern Ireland Rare Disease Partnership Team
