Recessive Genetic Conditions – parent and carers experiences of services

We'd like to hear from parents or carers of children living with a recessive genetic condition. Do you know what services can support you? Have you experience of using recessive genetic services?
2 Muslim Women

We are working in collaboration with Firvale Community Hub to hear about your experiences and the services you may be using.

What is a Recessive Genetic condition?

We all have thousands of genes inside our cells, the codes that control our bodies. We have 2 copies of all our genes, one copy from our mother and one from our father, people from all communities carry several changed genes no matter where they are from or what their background is. Some genetic disorders only occur if a person has two copies of the same changed gene, one from their mother and one from their father. These are called recessive disorders, such as Thalassemia and cystic fibrosis.

How can sharing your views help?

Firvale Community Hub and Healthwatch Sheffield would like to understand the types of services families are accessing, how they find out about services and whether more needs to be done to support families managing recessive genetic conditions.

If you would like to help us improve services, please share your experiences.

Share your experiences

The survey has 7 - 15 questions depending on your answers. Some of them are multiple choice, and some of them give you the space to share more of your own experiences.

The survey is open until Monday 8th February 2021.

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