We have created some documents to support you and your family with these conversations, particularly if you and your family are not in close contact. But you may also find the templates and information useful when thinking about how you communicate with close relatives. Of course, these are just ideas that you may want to adapt to suit your personal circumstances.
Please find below some suggested wording for a letter/email as a follow-up to distant family members after your initial introductory letter/ email, if you have not received a response.
Dear [insert family member name],
I hope you are well. I thought I would write to you again, as I did not receive a reply to my last [delete as appropriate] [letter,email/text], telling you that I have a rare condition, which is hereditary. This means that this condition runs in our family among those who are related to me by blood, and who may share the same gene. This may include members of our extended family, but not in-laws.
I know it can be difficult to talk about such matters, but I would be happy to explain more and point you to the information you may need, so that you can decide whether to discuss this with your doctor and your family. Please do get in touch if you would like me to share some more information with you, by email, or perhaps we can arrange a time to talk. My phone number is [add a phone number].
I look forward to hearing from you.
Kind regards,
[Insert name/signature]
NP-CEMEA-00108 August 2021