01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Address: Brentano Suite, Solar House, 915 High Road, North Finchley, London, N12 8QJ
Telephone Number: 0208 123 5022
Email: info@jnetics.org
Website: www.jnetics.org
Registered Charity Number: 1134935

Prevalence of Jewish Genetic Disorders: Though cases of the most severe recessive conditions that we cover are rare – 1 in 5 Ashkenazi Jews are carriers of at least one of these severe genetic disorders.

The less severe recessive disorders that we cover are more common with carrier frequencies ranging from 1 in 3 to 1 in 15

1 in 40 Ashkenazi Jews are carriers of a BRCA mutation which significant increases their risk for developing breast, ovarian or prostate cancer.

What are Jewish Genetic Disorders?

The conditions that we cover have a scientifically established higher prevalence among people of Ashkenazi Jewish ancestry relative to the general population.

These vary in severity, but include conditions that are fatal in childhood and others that lead to chronic disability and shortened lifespan.

The list and details of the conditions that we cover can be seen at:

Ashkenazi Jewish genetic disorders

What support is available?

Jnetics is a national charity with strong links to international organisations.

Jnetics is the only organisation in the UK that focuses on improving the prevention and management of Jewish genetic disorders (JGDs).

We were established to raise awareness and to help anyone affected and at risk to access the best information, services and support available relating to JGDs.  In addition to our core awareness-raising, information provision and signposting work, much of our work in recent years has focused on improving access to responsible genetic testing.

Jnetics established the first community carrier screening service covering 9 of the most severe recessive JGDs. This helps members of our community to identify if they have a high risk of passing on a severe recessive disorder to their children and explore the various options available for managing this risk.

We have an established working relationship with the NHS – delivering our screening services in partnership with Northwick Park Hospital’s clinical genetics department and Liverpool Women’s Hospital laboratory.

Information provided by Jnetics, 26th June 2017

Breaking Down Barriers Project Overview

“Jnetics is dedicated to improving the understanding, diagnosis and management of Jewish genetic disorders (JGD’s) in the UK Jewish community, and so far as possible to eliminating their occurrence.”  Funding from Breaking down Barriers will contribute towards a much larger project covering four specific areas:

  • Education of Young People – produce an education programme aimed at sixth form and University students and to young adults contemplating marriage to promote responsible management of JGD’s amongst young people.
  • Screening provision and facilitation – develop a carrier screening programme for recessive JGD’s to support the education programme. Similar work is already taking place within their successful Jnetics carrier screening programme.
  • Advocacy within the Jewish and wider community – build a collaboration of community leaders to support and promote education and screening.
  • Signposting/Information Provision – develop and maintain their website and resources

Year 2 Project
The Breaking Down Barriers Advisory Group met in November 2017 to review the grant monitoring forms for year 1 projects and to consider the action plans submitted for year 2. Following successful completion of year 1, they were pleased to approve the plan submitted by Jnetics to carry out the following work:

  • Continue with their project and now focus on delivering information on risk management and offering carrier screening to year 12 students in 7-8 Jewish secondary schools
  • Provide information about Jewish genetic disorders as an integral part of the marriage registration process
  • Continue to support Northwick Park Hospital and Barnet Hospital Genetics Departments to deliver community screening.