Support for families in Scotland, Wales and Ireland
Families living with Congenital Hyperinsulinism (CHI) outside England can access tailored support through our charity and organisations we are members of. This page outlines resources and contacts for families in Scotland, Wales, Northern Ireland, and Ireland.
Supporting Families in Wales, Scotland, Northern Ireland and Ireland
The Children’s Hyperinsulinism Charity UK and Ireland is currently seeking new ways to support families. We aim to bring families together, provide resources and advocate for families, understand local concerns and issues, connect and network with charities and organisations.
To help us to achieve these aims we welcome involvement and feedback from families to help us to get our support right and to ensure it works for the families we represent.
National and European Partnerships
We’re proud to be members of key rare disease organisations, including:
- NIRDP – Northern Ireland Rare Disease Partnership
- EURORDIS – Rare Diseases Europe
- Genetic Alliance UK – Supporting families affected by genetic conditions
These partnerships help us advocate for better care, connect with wider support networks, and ensure the voices of CHI families are heard across the UK and Europe.
CHC Trustees in Scotland and Ireland
We’re proud to have regional trustees supporting families across the UK and Ireland.
- Steff, our Trustee for Scotland and Northern Ireland, has recently moved from Scotland to Northern Ireland.
- Ciara, our Trustee for Ireland, brings lived experience and strong connections to Irish families and services.
They help ensure that the voices of families outside England are heard in our advocacy, resources, and events.
The Children’s Hyperinsulinism Charity – Trustee and Parent Representative Steff Bradley.
Links to charities and organisations that can provide resources on healthcare, education and support:
Support in Scotland:
Enable Scotland – A leading charity supporting people with learning disabilities and their families. They offer help with education, employment, social care, and inclusive community programmes.
Contact Scotland – Provides advice, workshops, and emotional support for families with disabled children. Their team offers guidance on benefits, education, healthcare, and transitions into adult life.
Support in Northern Ireland
Contact Northern Ireland – Offers guidance and emotional support for families with disabled children. Their services include help with benefits, education, healthcare, and navigating transitions.
https://contact.org.uk/northern-ireland/
Northern Ireland Rare Disease Partnership (NIRDP) – A collaborative organisation working to improve the lives of people affected by rare and hard-to-diagnose conditions. NIRDP connects families, clinicians, researchers, and policymakers to drive positive change across Northern Ireland
Support in Wales
Contact Charity – Offers tailored support for families with disabled children across Wales. Their services include workshops, online drop-ins, benefits advice, and guidance on education, healthcare, and sensory needs. They also run campaigns to improve policy and access to services.
Support in Ireland
The Children’s Hyperinsulinism Charity – Trustee and Parent Representative Ciara Grace
Email: ciara@hyperinsulinism.co.uk
Enable Charity – A national disability organisation providing services to children and adults with physical, sensory, and intellectual disabilities. Their support includes therapy, assistive technology, respite care, and inclusive community programmes across Ireland.
Rare Ireland – A family-led charity advocating for people affected by rare conditions in Ireland. They provide emotional support, raise awareness, and work with national policy groups to improve services. Rare Ireland also hosts events and campaigns to amplify the voice of the rare disease community.