We know that it can be very difficult to get travel insurance when you have an undiagnosed child. Families find it very hard to explain their child’s needs and/or the premiums can be very expensive.
This isn’t just a problem for families affected by a syndrome without a name, it can also be difficult for families and patients affected by diagnosed genetic conditions so Genetic Alliance UK has produced some information that might be useful. Have a look at Genetic Alliance UK's leaflet on travel insurance and for more general information on genetics and insurance
It’s also a good idea to talk to other families affected by a syndrome without a name to see which companies they have found helpful.