greetingsFederation

Dear Families, Professionals, Carers and all other Participants in any capacity

Welcome to the 10th CdLS World Conference in Bad Neuenahr-Ahrweiler. The reason for the over extended greeting is simply to offer an inclusive hand of welcome to everybody. Whether you are reading this as one of the families, one of our dedicated professionals, a carer for an affected person or someone working for the organisers, translators and other staff who will run this event, ALL are very welcome. As the Mayor has already said, the theme for this conference is “Together” and a very apt theme it is.

One of the simplest aims of conference, is to bring people together. We share not only crucial information, informative experiences but we also share the joys, trials and burdens of living with people affected by CdLS. An old English adage says, "a trouble shared is a trouble halved!"

It is also one of the mainstays of the World Federation of CdLS Support Groups that we are stronger “Together,” can achieve more “Together.” CdLS is rare, accounts for a tiny fraction of the population. As individual national support groups representing maybe dozens, maybe hundreds of CdLS people, we can seem like a very insignificant section of the community. Bring those groups together and we are representing thousands across the world. Connect us with other rare disease groups through our links with organisations like Eurordis and we are now a significant proportion of the population. Do you see the power of “Together?”

Likewise, the Scientific Advisory Council (SAC) is a panel of experts on all of the medical and other therapeutic specialities that concern CdLS. The SAC brings all of that knowledge “Together.” These two bodies have created the partnership between families and scientists which brings us all together, here at conference. It was working together that gave us the newly published Global Treatment Guidelines for CDLS - available on this website!

So welcome to this, the 10th CdLS World Conference. I look forward to meeting all of you, hearing your stories and joining you in learning more - Together!

I hope you get the most out of this shared experience

David Axtell
President
World Federation of CdLS Support Groups