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Travel insurance with a super-rare genetic disorder

My child has a very rare genetic disease, so rare that even travel insurance policies with specialist insurers don't have this disease on their lists. I've tried phoning up anonymously and asking if I could get travel insurance for her and the answer is always no (I want to avoid being turned down on an actual application). I can't even buy a policy with her condition excluded from cover as they don't know what it is.

I've just ended up staying within the area where the European health card works and buying insurance with the most closely related disease on it - and hoping for the best! Surely there are some other people on here in this position, what do you do?

Comments

  • InsideInsurance
    InsideInsurance Posts: 22,460
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    What is the condition?
    If there is a charity for the condition then see if they have a recommendation?
    Sometimes it can be done with looking at the symptoms it produces rather than the condition itself but that is a bit of thin ice.
  • SkyeKnight
    SkyeKnight Posts: 513 Forumite
    I'd rather not name it as it's rare enough to identify me!

    Who insures based on symptoms - that sounds interesting? The irritating thing is that this disorder is less dangerous than asthma or severe ezcema, certainly not a high risk disease that you would expect to pay hundreds of pounds extra to insure.

    If I simply don't name it at all would that totally invalidate the insurance as they wouldn't have provided insurance if they had known about it? Or does it just mean the pre-existing condition is not covered?
  • Annisele
    Annisele Posts: 4,827
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    The Financial Ombudsman Service publishes a technical note on non disclosure in insurance cases. I know that note doesn't really cover your issue, but it might give you an idea of what would happen if you didn't disclose.

    Have you tried to find an insurance broker? Sometimes they can help with unusual circumstances. (Plus, it's possible some of the companies who've said "no" would say "yes" if it went in front of the right person at the insurance company. When faced with something you've never heard of, it's far easier to say "no" or "probably not" than to come up with a quote on the fly).
  • Hi, I am in the same boat as you and am really struggling to find insurance for my daughter who has a very rare genetic disorder - non of the insurance companies have heard of it so wont insure. Just on the off chance I typed in the google search 'insurance for rare diseases' and it came up with this. I will keep searching and making hone calls tomorrow and will let you know if I get anywhere. I am on a group relating to the disease on facebook so will ask on there and let you know. k x
  • I have found a website that insures my baby for her condition whilst abroad. What she has is very very rare and it has come up on the conditions list, so it may be worth a try for you too. Its called insurance with


    it has just given me a quote for 2 weeks for family of 4 (inc baby who has the condition) for £51.53. which didn't think was bad. The only stipulation was that there is an extra £100 excess on top of the £75 just for baby - the rest of us pay £75 each.


    Hope you get sorted x
  • SkyeKnight
    SkyeKnight Posts: 513 Forumite
    I have found a website that insures my baby for her condition whilst abroad. What she has is very very rare and it has come up on the conditions list, so it may be worth a try for you too.

    I've tried loads of online insurers with lists of "rare" conditions - but they seem to get the lists from the same place - and have the same two types of the disease (but not my daughter's one).

    To add to the confusion, lets say my daughter has a type of XYZ disease. Now, 99% of people with XYZ have Common XYZ - and then there are about 30+ other rare types. The insurance lists always include "XYZ" and "XYZ some other type". People with Common XYZ usually refer to it without the word "Common" in front as it is what almost everyone has.

    So, I insure my daughter as having XYZ - because she does, but I know perfectly well they are referring to Common XYZ - otherwise why would they list one of the sub-types? Plus most of the other types are severe to deadly so they would hardly be covered with no additional premium.

    Now I've read Annisele's link, I wonder if that would be misrepresentation!! But if I don't disclose it then it's definitely deliberate non-disclosure. The only alternative is to remain forever in the UK with a disease that is less dangerous than diabetes, eczema or asthma.
  • InsideInsurance
    InsideInsurance Posts: 22,460
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    Without knowing the condition its hard to advise.

    Now if you take diabetes mellitus and diabetes insipidus these arent actually the same condition at all but "diabetes" means excessive urine production, mellitus is related to insuline/blood sugars, insipidus however is to do with ADH. By common use the former is abbreviated to diabetes however arguably either could be but any insurer should be clarifying which condition the person has.

    On the other hand, if you take my condition you could prefix it with congenital, as I was born with it, or partial, as I only have some of the impacts, but no insurer is ever going to have those prefixes in their list of conditions as its rare that my condition is there at all let alone with acquired & congenital plus pan & partial. I do legitimately just select my condition, once I had to select pan as there wasnt the option with partial nor no prefix and given that a more sever version it was a safe bet.

    If you speak to companies over the phone they often will pass you to medical screening who will have a better idea of how to deal with it and may also give you the option of excluding the condition.
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