Breaking down barriers to reach South Asian communities
We’ve joined a group of 12 charities supporting people with genetic disorders on a project to help improve knowledge and understanding genetics in South Asian communities.
The project, which is funded by Sylvia Adams Charitable Trust, aims to help organisations to develop new guidelines for supporting families at increased risk of having a child with a genetic disorder. It also helps to address difficulties and inequalities experienced by families in accessing mainstream services.
Organisers of the project said: “At Breaking Down Barriers, we believe that patient organisations and support groups have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population. We want to strengthen the ability of patient organisations and support groups to develop supportive and inclusive services for individuals and families affected by genetic disorders.
“There are a small number of projects around the UK focusing on working with families from diverse backgrounds. Many of these are being driven by health professionals and while they may be benefiting small groups of people in specific locations, there is a clear need for a national project to benefit larger numbers of people. Breaking Down Barriers can provide a model of good practice whereby patient organisations and support groups can demonstrate a key role in providing effective support to families affected by genetic disorders.”
Research shows that patients and families experience problems accessing services, so providing information about genetics that is easy to understand, and informing people about the different reproductive choices available, can help them make informed choices.
Through this project we’ve developed a new guide to give clear and concise information for families.
Bill Crowder, Head of Advisory Service at the Huntington’s Disease Association, said:
“We have learned and shared a great deal by getting involved with this project and we are grateful for the investment from the Sylvia Adams Charitable Trust. I would also like to thank the families and professionals who gave their time and knowledge to help us create the new guide.”
Download the guide here
To request a paper copy, please email info@hda.org.uk or call 0151 331 5444.
We’ve joined a group of 12 charities supporting people with genetic disorders on a project to help improve knowledge and understanding genetics in South Asian communities.
The project, which is funded by Sylvia Adams Charitable Trust, aims to help organisations to develop new guidelines for supporting families at increased risk of having a child with a genetic disorder. It also helps to address difficulties and inequalities experienced by families in accessing mainstream services.
Organisers of the project said: “At Breaking Down Barriers, we believe that patient organisations and support groups have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population. We want to strengthen the ability of patient organisations and support groups to develop supportive and inclusive services for individuals and families affected by genetic disorders.
“There are a small number of projects around the UK focusing on working with families from diverse backgrounds. Many of these are being driven by health professionals and while they may be benefiting small groups of people in specific locations, there is a clear need for a national project to benefit larger numbers of people. Breaking Down Barriers can provide a model of good practice whereby patient organisations and support groups can demonstrate a key role in providing effective support to families affected by genetic disorders.”
Research shows that patients and families experience problems accessing services, so providing information about genetics that is easy to understand, and informing people about the different reproductive choices available, can help them make informed choices.
Through this project we’ve developed a new guide to give clear and concise information for families.
Bill Crowder, Head of Advisory Service at the Huntington’s Disease Association, said:
“We have learned and shared a great deal by getting involved with this project and we are grateful for the investment from the Sylvia Adams Charitable Trust. I would also like to thank the families and professionals who gave their time and knowledge to help us create the new guide.”
Download the guide here
To request a paper copy, please email info@hda.org.uk or call 0151 331 5444.