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The BDFA cannot specifically recommend or endorse any organisation or insurance broker with regards to the provision of travel insurance; however we appreciate that it can be challenging to find appropriate cover when a family member has a pre-existing medical condition.

We recommend you obtain at least 2 – 3 quotes from different sources to help you find the best deal. At the same time it is important to feel confident that you have appropriate coverage for any eventuality so please be aware this may not always mean the cheapest option is the most suitable.

It may be advisable to speak to one of your child’s medical team (G.P., Community Paediatrician or Nurse etc.) regarding assistance in providing information or guidance to the travel agent, insurer and airline.

It is worthwhile checking that your policy will cover any equipment, (e.g. communication or mobility aids, wheelchair etc.) that may be required for the trip.

It is important that you clarify the level of your insurance coverage is in line with potential costs for any treatment or interventions whilst you are in a foreign country e.g. the USA may require higher levels of coverage than some European countries.

The following are some links that may be useful to you when planning to travel:

This link provides useful advice on things to consider when planning and preparing for travel overseas:

This link provides information about travel insurance and declaring pre-existing medical conditions:

This link is to the Genetic Alliance Guide to travel insurance for those with pre-existing medical conditions:

This is a link to FISH Insurance’s webpage (a well-known company specialising in disability insurance provision) regarding their travel insurance policies for those with pre-existing medical conditions:

This link provides details for some alternative companies that are reported as offering specialist travel insurance for those with disabilities and complex medical conditions:

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All donations help us to provide the best support we can to families affected by Batten Disease.

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Thank you for your support.