Events planned for 2019
We have recently planned our events schedule for 2019. At present the events listed immediately below are not open for booking.
However we have listed them so to help you plan your diary. Once an event becomes open for booking, the full event information including details of how to book will be given lower down on this page.
How to choose a university or course – 19:00 on Tuesday 30 April. London location TBC.
The message of Eid for interfaith harmony – 19:00 on Tuesday 18 June, Committee Room 4A, House of Lords, in Parliament.
Dinner during the Conservative Party Conference – 18:30 on Sunday 29 September. Manchester location TBC.
Perspectives on the Israeli / Palestine conflict – 18:30 on Wednesday 13 November in Parliament.
The genetic risks of cousin marriage
Marriage between close relatives such as first cousins is rare in some communities, while being commonplace in others.
What are the real risks faced by cousins who marry of having a child which is affected by a serious, possibly life-threatening, genetic condition? What help is available to cousins who are married and want to have children safely?
Our expert speakers will discuss this vital issue with knowledge and sensitivity. They are well equipped to discuss issues affecting Britain’s Muslim communities and to share the experiences of Britain’s Jewish communities.
Monday 11 March 2019. Doors open 18:30. Presentations 19:00. Q&A 20:00.
Committee Room 4A, House of Lords, Houses of Parliament, Parliament Square, Westminster, London, SW1A 0PW.
Use Cromwell Green main visitors entrance.
You must book using this Eventbrite link.
Sylvia Adams Charitable Trust
National Development Manager Alström Syndrome UK & Project Lead for Breaking Down Barriers
Community Engagement Manager for Breaking Down Barriers
Executive Director, Jnetics
Chairman, Conservative Muslim Forum
About Breaking Down Barriers
Research on genetic service delivery and patient/family experience shows that patients and families affected by genetic disorders continue to experience barriers to accessing services. It is well documented that this is particularly so for those from minority ethnic groups and those with close cousin marriage.
At Breaking Down Barriers, we believe that patient organisations, support groups and community organisations have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population. The purpose of this project is to strengthen the ability of organisations to develop supportive and inclusive services for individuals and families affected by genetic disorders and to ensure that people have access to appropriate and accessible information to enable them to make informed choices in terms of family planning.
Thus Breaking Down Barrier was developed as a way to engage multi-ethnic populations affected by genetic conditions, through offering small grants to charities, patient organisations, support groups and community organisations nationally. Bridging the gap of essential support the NHS cannot offer.
Jnetics is the only organisation dedicated to improving the prevention and management of Jewish genetic disorders (JGDs) in the UK. The charity raises awareness about JGDs, signposts to the best available information and support, and facilitates access to responsible screening.
JGDs refer to genetic disorders that, though not exclusively Jewish, have an increased prevalence in people of Jewish ancestry relative to the general population. These vary in severity but include many severely disabling, life-shortening recessive conditions as well as the life-threatening dominant BRCA-associated cancers.
In 2016, Jnetics established ‘GENEius’ – a targeted education and screening initiative for young Jewish adults endorsed by all UK synagogue and community leadership organisations. Working with the NHS, Jnetics provides JGD education and screening for severe, recessive JGDs through their GENEius school (Year 12), university and pre-marriage programmes.
Jnetics, via their GENEius activities, aims to change UK Jewish community culture so that JGD education and screening become standard practice – as they are in communities outside the UK with significant life-saving impact.