ALPE Foundation at the European Union

At the end of September 2018 a large representation of the ALPE Foundation

went to the headquarters of the European Union, in Brussels, with a goal that could be described as two-way: inform and raise awareness among parliamentarians, officials and activists of the EU on the problem of ASDD - Achondroplasia and Other Skeletal Dysplasias with Dwarfism, on the one hand, and to be informed, inquire and find out possible ways of action so that our message resonates more and better, on the other.
Our representation included the entire team of ALPE and eight young adults whose vision of reality fills all those who work in the Foundation and all those close to the energy Foundation. They have grown, as they say, close to ALPE and they are the ones who best represent us.

The European Union is a political body that is frequency criticized as abstract and far from the real lives of citizens. An immense bureaucratic apparatus, a heavy construction that does not affect the day-to-day, tangible reality. It is a correct criticism. But it is also a correct criticism to say that it represents an ambitious dream, a titanic effort to improve the lives of more than five hundred million people, to share responsibilities and aid, to hold the disintegrating forces, to avoid confrontations between countries, to work together. In this trip, we have known this great apparatus and its organizations have become real to us (the Commission, the Parliament, the Council, and all the substructures and sections) and we have met a handful of the people who work in them. And we have seen that when we began to inform them about our problems and needs, their faces went from a professionally disinterested expression to a sincere interest, more and more delivered, and ended by exclaiming, suggesting and advising.

There were meetings within the headquarters of the European Parliament with Elena Valenciano, Soledad Cabezón, López Aguilar, Irena Moozova, José Inácio Faria y Enrique Terol. Basically, ALPE Foundation made them aware of the problems of people with ASDD around two fundamental axes: lack of dignity and accessibility. The importance of the ASDD to be mentioned in the draft document of the European Accessibility Act was understood by all, as well as the need for the European regulation of the UN Convention to be respected in each country, of course, in Spain too. The accessibility must contemplate the characteristics of different people from the users of wheelchairs. In addition, medical centers and schools must have available and updated information about ASDD.

The proposals were varied, among them the most urgent, to have a voice that is heard in the European Union, to promote the union of organizations in Europe, to approach from the legality the faults to the regulation on dignity and inclusion and accessibility, to amplify the diffusion social of our problem, et cetera.
New generations of people with ASDD will be soon or are already in charge of acting to make this a better world. The days spent in Brussels have been an opportunity for union and exchange of ideas, for the creation of synergies, for the elaboration of projects. More united and stronger than ever, we look forward with confidence.