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 an introductory letter/email or text message about hereditary transthyretin amyloidosis (also known as hATTR amyloidosis), which you may find helpful when making initial contact with distant family members, particularly if you and your family are not in close contact.
This correspondence should be addressed to relatives who are related by blood − in other words, family members who may share the same gene. This includes first-degree relatives (parents, grandparents, children, brothers, sisters, aunts, uncles, and cousins) and may include members of the extended family (such as great aunts, great uncles and second cousins, but not ‘in-laws’).
Dear [insert name],
This is [insert full name] and I’m [add detail on how you are related]. I’m contacting you because I’ve recently learned from my doctor that I have a rare condition that is hereditary (which means it runs in our family) among those who are related to me by blood. This may include members of our extended family, but not in-laws.
I can appreciate that you may have some questions. If you would like to know more, or to have a conversation about this, please do get in touch so that I can share some more information with you. I would be happy to email you or perhaps, we can arrange a time to [delete as appropriate] talk on the phone/meet up. My phone number is [add a phone number].
I hope you will think about getting in touch and look forward to hearing from you.
NP-CEMEA-00107 August 2021