Sainsbury's Pontllanfraith

The Parish Trust is a Christian based organisation but exists for the benefit of everyone in the local area. The Parish Trust is the umbrella organisation for a number of projects, our largest being the CARE Project which delivers food parcels and pastoral care to those in need. We launched Caerphilly Baby bank in January 2025, supporting expecting and new mothers with essential maternity and baby supplies. We also offer bereavement courses, a data bank for those struggling with digital access and a thriving community of groups and activities for children and young people.

SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK. It is estimated that around 6,000 disabled children are born every year with a genetic condition likely to remain undiagnosed. Without a diagnosis families have no idea what the future will hold for their child. Will they walk? Will they talk? How long are they likely to live? Families struggle to have their needs taken seriously and access the services and support that they vitally need. Many feel extremely isolated and alone. SWAN UK supports families in hospital and at home offering 24/7 access to support and information. We run regular events to bring families together and provide opportunities to make precious memories. We support siblings to make new friends who understand how difficult having an undiagnosed brother or sister can be. We educate professionals about the issues faced by families affected by a syndrome without a name to help families receive high-quality coordinated care and appropriate testing or treatment. Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. We know there are so many families out there who still need our support, which is why we are aiming to double our membership and help families feel less isolated and alone.

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