Why should I go to the Congress?
Why should I go to the Congress?
Affected
For those affected by the syndrome, first of all: because it is an opportunity to access consultation with national and international experts in the same venue. They are the ones who know the most about what happens to them on a daily basis. Know if any of your ailments and/or conditions have a solution, or failing that, a palliative. Know where Cornelia de Lange's research is in the world and what possibilities for a better future are presented to us, to improve the quality of life of our children and their families.
Families
They are at the same time, in most cases, the caregivers; That is why we will try in this event: to help each other and with professionals to better understand: what happens to our children, why, how to help them, how to interpret their communication, no matter if it is verbal, gestural, signs, etc. We know that achieving “communication” is basic and essential for our children. May we families come out of this meeting strengthened in our daily tasks with a Cornelia and empowered not to feel that we are alone in this fight, that there are many of us who share the same problems daily; to be able to generate a bond that gives us “wings” and to be able to put together a great group to turn to when we need it.
Professionals
Even if they are aware of the syndrome and its circumstances, they will also come out enriched from this International Meeting. They will all be able to talk together and from their different points of view, from Applied Science to Cornelia de Lange. As there are few people affected in the world, each person will have the opportunity in their area of expertise; have more cases nearby than they could normally deal with in an entire professional life. Thus, they will know directly about the syndrome in our children, while at the same time they will be able to help us better. This involves us all: we will have more expert professionals, knowledgeable about our problems and we will contribute to the research being carried out on the disease.
