01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

There are many organisations who continue to have open and honest conversations about how we can ensure services and support are accessible to all.

The organisations below provide information, support and advice about genetic conditions and some also provide information about specific conditions.

Community Genetics Team (covering Blackburn with Darwen, East Lancashire and Oldham) offer services and support to enhance the understanding of genetics in the community. They support families to understand the impact that a genetic codition could have on the wider family and the support which is available to them. They do this by visiting families within their own homes to provide information and support.

They also offer a range of resources about genetics for both families and professionals.

You can find out more about their work by clicking on the website link below:
http://www.communitygenetics.org.uk/

Genetic Alliance UK have produced information for patients, families and anyone interested in genetic conditions.

They provide the basics of genetics and inheritance of genetic conditions, information about research, different types of genetic testing, genetic services in the UK and reproductive techniques for people who may pass on a genetic condition, as well as information about living with a genetic condition.

You can find this information on their website HERE

The Genetic Aware provide a website to help families and professionals understand more about the links between close relative marriage and genetic disorders, and about the services available in Sheffield.

You can find out more by clicking on the link to their website below:
http://geneticsaware.group.shef.ac.uk/index.htm

Genetic Disorders UK offer a genetic counsellor led helpline service for people with a genetic disorder, their relatives, professionals and anyone who needs to know more about genetic disorders and how to cope with the difficulties they can present.

The helpline is the only free helpline in the UK for all genetic disorders. It is a confidential and non-judgemental space to find out the information you need and discuss your feelings, concerns and fears about a genetic disorder.

How you can contact the helpline
Telephone answering service (UK): 0800 987 8985
Email: helpline@geneticdisordersuk.org
Contact form: http://www.geneticdisordersuk.org/contact-us/

You can find full information by clicking on the website link below:
https://www.geneticdisordersuk.org/about-us/helpline/

Genomics England was set up to deliver the 100,000 Genomes Project.

This flagship project will sequence 100,000 whole genomes from NHS patients with rare diseases, and their families, as well as patients with common cancers.

Genomics England provide useful resources about understanding genomics, including what is a genome, how does the sequencing work and specific information about genomics in healthcare and data provided.

Further information can be found by clicking on the Genomics England website link below:
https://www.genomicsengland.co.uk/understanding-genomics/

The GENEius Programme is an education and screening initiative delivered by Jnetics.
It is designed to eliminate severe recessive Jewish genetic disorders (JGDs) from the UK Jewish community.

GENEius focuses on young Jewish adults in 3 main groups;

  • Sixth form students
  • University students
  • Couples going through the synagogue pre-marriage process

The programme informs young Jewish adults about the significance of JGDs and the value of carrier screening.
It provides access to responsible and affordable screening, enabling participants to identify whether or not they are carriers of one or more recessive JGD.

Young adults can then make informed choices to help avoid the chance of passing on one of the severe recessive JGDs to their future children.

Click HERE to find out more about the GENEius programme.

On the Mind website Megan opens up about Mental Health within Asian communities.

“To be honest, I’m not sure why mental health issues are frowned upon and shoved under the rug in many Asian cultures. It’s infuriating and it’s painful. No one wants to listen. No one wants to talk. You don’t feel safe bringing it up for fear of stigma and shame.”

National Institute for Health Research have funded the Optimising EXome PREnatal Sequencing Services – EXPRESS project.

Kerry Leeson-Beevers who is leads the Breaking Down Barriers project is heavily involved in this research project.

You can find out more via the website link below:
 
https://www.fundingawards.nihr.ac.uk/award/NIHR127829