How can a congress have a soul?

Because those who organize it and those who participate in it do not fear feelings.

The 6th International Congress on Achondroplasia and Other Bone Dysplasias, took place in Gijón on 12, 13 and 14 October 2018 and exceeded the expectations placed on it by ALPE Foundation, the organizer. The ALPE congresses, are held every four years and are characterized by always placing people with dwarfism at the center and be the preeminent point of all activity: it is, neither more nor less, the driving principle of ALPE Foundation in its activity daily applied to a congress.

Thus, this congress is built over the highest quality information, with the presence of the best experts in the world in clinical practice, the most renowned scientific researchers, the most sensitive social analysts, and human rights activists, along with an unavoidable and active presence of people with dwarfism and families, and  during the congress days, promotes relationship between all of them.

In this 6th congress, 127 speakers and workshop participants from all around the world traveled to Gijón: Australia, Japan, United States, Mexico, Guatemala, Colombia, Peru, Uruguay, Argentina, Pakistan, Russia and from many European countries, to share three days with more than 500 also from a variety of countries and all regions of Spain. The magnitude in figures is overwhelming for an organization that puts all its mind and heart into the enormous work.

In the medical specialities field, professionals such as Ravi Savarirayan, William Mackenzie, Mary Theroux, Dror Paley, David Feldman, Guirish Solanki, Virginia Fano, Laurence Legeai-Mallet, Joana Bengoa, Christoph Kampmann, and also counting with important Spanish experts stand out: Ignacio Ginebreda, from Dexeus, Felipe Luna and his team, from the Hospital Virgen de la Victoria in Málaga, Jorge Domenech and Rosendo Ullot, from Sant Joan de Deu. Also the Asturian specialists, such as Juan Carlos Rial Basalo, ALPE consultant, and the professionals of the same ALPE team: Carlos León, Carmen Barreal, Belén Ojeda, Begoña Bascarán, Socorro Martínez, Guillermo Ibaseta. It is precisely these professionals that take care of the health of children and adults affected by bone dysplasias with dwarfism. Many of them, coming from the most prestigious centers in the world, have the generosity (an invaluable luxury for those affected) of assessing and advising patients with complicated cases during the days of the congress, in separate rooms at the venue.

On the other hand, four pharmaceutical companies that have started or are beginning clinical trials in humans for products for achondroplasia presented the advances on their projects at the congress. The companies present were BioMarin, Therachon, Ascendis Pharma and QED Therapeutics. Only one company, Ribomic, could not attend the session. Science is heading ahead in a dizzying way and expectations are high among people with achondroplasia and families, for these pioneering trials in history. However, achondroplasia is the most frequent of bone dysplasias with dwarfism, among other very varied conditions (there are 436 skeletal dysplasias described), all considered rare diseases and causing disability. People who have bone alterations and dwarfism will continue, even when the most daring hopes are fulfilled, being the center of ALPE activity and the welfare of people its axis and objective.

Both clinicians and researchers have stated the impressive value of the congress, considering it a transformative experience, a unique meeting in the world in which all its activity takes on a more real and deeper meaning: the human touch and indefinable and real feeling that creates a sense of fraternity and union. At the ALPE congress, information and knowledge are filled with values and motivation.

But not only science and medicine are key to the lives of people with dwarfism. Achondroplasia and other dysplasias are disabilities characterized by a heavy psychosocial burden. Achondroplasia is a disability that, compared to other disabilities, arouses very little empathy, as if it always happened to others, as if it were more alien, more different than other types of conditions. The figure of the jester, the morbid, the humiliation of human dignity, are still alive as they have been throughout history. Shows that make mockery and derision of people with dwarfism are still the order of the day and directly affect the lives of thousands of people who need to be seen as much more than bodies, as much more than stereotypes. At the ALPE congress, it was discussed this specific problem of dwarfism, by lawyers within a social and legal perspective, journalists, activists, politicians, and clinical and social psychologists.

There were also sessions about sports, its importance in the construction of the personality. Parents and teenagers have talked about their feelings and teachers debated the importance of inclusive education.

Also, numerous practical workshops have taken place in parallel with great success. Themes as sexuality, theater, osteopathy, pregnancy and childbirth, rehabilitation care and pre and post-surgical, psychology, emotional education ... The activity was constant and participants could choose the sessions according to their interest.

And on the night of the 13th, ALPE entertained all participants in a typical Asturian celebration, the "Espicha", that literally means "the opening a large cider barrel". Cider is a traditional drink of Asturias. During that night, any existent tensions were released and the joy expressed in a way that only the cider and the swollen soul of the people with dwarfism and their families, of the professionals, of the organizers, could achieve. A huge joy in a big party. Friendships were born, projects started to be shaped up, plans for the synergies created to take shape, hugs, and satisfaction.

Since the beginning until the end, the congress is a recognition of brotherhood and that we are not alone, that together we are stronger and happier, that there is much to be done, a lot of world to improve, and that we can do it. These are the conclusions of a major international congress on achondroplasia and other bone dysplasias with dwarfism.

 

See here the Congress Photo Gallery

With the sponsorship of Spanish Health Ministry