Parent and Carers' Experiences of Services - Genetic Conditions
What is a genetic condition?
We all have thousands of genes inside our bodies. We have 2 copies of all our genes, one copy from our mother and one from our father. Some people carry several changed genes regardless of their background. Some genetic disorders only occur if a person has two copies of the same changed gene These are called recessive disorders, such as Thalassemia and cystic fibrosis.
This survey has been designed in partnership by Firvale Community Hub and Healthwatch Sheffield.
Firvale Community Hub is host to the Community Based Genetic Literacy and Support Programme. The aim of the project is to raise awareness of close blood marriages and recessive genetic disorders. Our project lead works closely with families to provide consistent, accurate, culturally appropriate, sensitive information to families who may be affected or just want some information.
Healthwatch Sheffield is an independent watchdog for local health and social care. We are using this anonymous survey to find out about the experiences of families living with genetic conditions. We will share what we hear with the public, health and care services and decision makers who want to make improvements for local people.
If you have any questions about this survey, please contact us on 0114 253 6688.
Do you have a child that has a genetic condition?
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