In January 2012 Jnetics was delighted to receive a grant from Jeans for Genes to develop an effective ‘signposting’ service to facilitate access to the best available information, expertise and support for those affected by Jewish genetic disorders in the UK.
Earlier this year we carried out a Needs Assessment to identify the priority information and referral needs of those affected by JGDs, and to make sure that we develop a service that best addresses those needs using the resources available.
Over 20 interviews were conducted with carrier couples and families with children affected by a disorder, couples who have lost a child as a result of a JGD, couples at risk of passing a JGD on, young adults with a JGD, siblings and other family members. We also interviewed representatives of patient groups to gather intelligence regarding their experience of needs and existing gaps.
Following analysis of findings from the Needs Assessment (NA), we are now upgrading our website to improve information access and content. There will also be a new function whereby people can send individual questions via the website to our specialist information officer who will respond directly.
The service will be launched at the end of the summer so keep a look out for changes to our website and how you can send us your questions.
In the meantime, if you have any questions about this service or anything else relating to Jewish genetic disorders, please send us an email to: info@jnetics.org.
