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Rare Disease Day 2014

Rare Disease Day is an annual event, generally held on the last day of February and is supported right around the world. The purpose of the day is to draw awareness to rare conditions that require more attention and are overlooked more easily.

What is a rare disease?

A rare disease is defined as one that affects less than 5 in 10,000 people and at present there are between 6,000 and 8,000 known rare diseases and this number is increasing as new rare conditions are identified. Most diseases are hereditary, genetic, chronic and in most cases debilitating.

Although some diseases are detected in childhood, there are other people that aren’t aware they have a disease until later in adulthood. Some diseases can often go undiagnosed and without treatment, some people may find there life expectancy could be limited.

Rare diseases can affect both children and adults, they can occur at any time of life and most are life-long and some may get worse over time. In some cases, rare diseases can be life-threatening for example Huntington’s disease.

How rare is rare?

Although each rare disease affects a relatively small majority of the population, the total number of people affected by a rare condition appears to be quite large. Rare Disease UK, a national alliance for people with rare diseases, estimates that there could be as many as 3.5 million people living with a rare disease in the UK and 75% effect children.

If your child has been diagnosed with a rare condition you may feel quite alone to start with and be asking yourself lots of questions as to how this happened. You could also be told that your child is the only one in the country to be affected by the condition. I know this from personal experience however, it may be that the person who told you this has not seen a child with the same condition before, or even heard of it.

Nowadays, with the help of the internet and social media, it is more likely that you can get in contact with others who understand what you are going through. Nobody knows what you’re going through, or describes it better than another parent or person in a similar situation.

Travelling abroad with a rare disease

Just because you have a rare disease, this shouldn’t stop you from jetting off on holiday and experiencing the same activities and adventures as other holiday makers. You just need to make sure you prepare in advance, especially if you are taking children or if your condition is progressive.

If you have not already purchased travel insurance, it may be worth seeking out a specialist medical travel insurance policy. It will be vital that you are covered for emergency medical treatment while abroad and just as important, for cancellation costs in the event you become unwell prior to leaving. Family members and travelling companions should also be listed on the same policy, so the whole party is covered just in case!

Always inform your travel insurance provider about all of your pre-existing medical conditions. It is just as important to tell your insurer of any changes to your condition after you have bought the policy; they will need to update their records in the event you need to make a claim.

I know when I travel abroad with my daughter one of the first things I do, is to research where the nearest medical centre is located and should we require an ambulance, what is the emergency number we need to dial. Sometimes I think it is a shame that so much planning has to be done in advance of the holiday, but just think what could happen if you didn’t plan ahead.

Free Spirit travel insurance can offer you a specialist travel cover and we can tailor parts of the rare disease insurance cover to your exact requirements. We can provide you with the peace of mind protection to enable you to have a fun filled holiday like everyone deserves, especially children!

Let Free Spirit take the worry out of travelling abroad for you.