I am looking at how people/families with a genetic condition make sense of it and what sort of narratives they have about it. What sort of support is available.
Depending on what kind of genetic condition they are looking at, there are specific web portals from where you can get info about it. For example GARD - Genetic and Rare Diseases Information Centre where NIH helps in giving the latest information and updates.
https://rarediseases.info.nih.gov/
Hi Maureen,
I agree with the excellent input from my colleagues. In addition, depending on the spirituality/religion the person has, s/he can seek support from his/her spiritual mentor/director or clergy.
Thank you everyone for the resources and help in making sense of this. I have now limited my research to 'How do established ethnic minorities make sense of being diagnosed with a genetic condition?". This still appears to be a huge area I was thinking to obtain details of the ethnic groups by using the 'Official Classification of Ethnicity' (UK). It would be nice to know what is the equivalent used in other countries?
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