Northern Ireland Rare Disease Partnership

Story

🌟 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. ✨