The Brighton conference may have only just seemed to have finished but already plans for the next CdLS conference in the last week of July 2011 are under way. Next time families will find themselves in Copenhagen, Denmark.

Danish CdLS chairman Henrik Hasselstroem (above) will undertake the challenge with the help of his organisation and it’s a challenge he says is very important to Denmark itself and already there are ideas that it will be slightly different to the UK conference. “The cost for Denmark to host a conference like the UK one is too big, so we will change a few things,” says Hasselstroem. “The three important categories of any CdLS conference are the SAC meetings, Federal meetings, and Family meetings. At the Copenhagen conference these will still apply, but the
family meetings will be smaller, as we’re not sure there will be many families. Also, there will be just one doctor representing each country, with their country foundation paying the cost, as opposed to the host country covering all of the doctors’ fees. But these are just a few ideas so early on in the planning stage at the moment.”

Henrik has a 15-year-old daughter, Sophie, who was diagnosed with CdLS at a year old. “We’re quite lucky as she has just a mild form of CdLS, she is able to read and write albeit of a ten year old at the moment. But when she was first diagnosed we didn’t know what lay ahead and it was daunting. Being within the organisation, and now head of it, is a great
help. We now have 45 people with CdLS in the Danish association,” says Henrik.

Coming to Brighton has been an important trip for Henrik and his family, and is also a reason why he is pleased the next conference will be held in his homeland. Henrik explains: “The problem we have in Denmark is that there is only one specialist doctor in CdLS in the country. Coming to Brighton and hearing new information from so many global experts is invaluable to us. When we host the conference we will be able to invite Danish doctors to listen to the experts in this field who will then, hopefully, become more interested in the syndrome.”

Some 35 people from Denmark attended the Brighton conference with five of them having CdLS. “It’s been great for all our families to come here and learn together and just be together.

“It’s a wonderful opportunity for us to meet other families, and, actually, I feel all of us together at the conference are one big family. We can compare our children’s problems, offer advice, or receive it, and generally we are a support network. We look forward to 2011 and welcoming our global CdLS friends to Copenhagen.”