Summary XII ALBA Conference on Albinism

Details: News; 01 October 2018; Hits: 2448

ALBA 2018 Conference

During the weekend of September 29-30 2018, ALBA held the XII ALBA Conference on Albinism, entitled "Breaking Myths", in San Rafael (Segovia). The ALBA albinism days are the annual meeting and serve as a meeting point for people with albinism, their families and researchers to learn, teach and share experiences about this genetic condition. This year it broke all attendance records with more than 230 participants and 95 families.

The Meeting was organized in three blocks: lectures-conferences, round tables and other activities.
LECTURES-CONFERENCES
The first talk was given by Dr. Lluís Montoliu, renowned scientific researcher in this field. His lecture entitled "Albinism: What do we know today? Diagnosis and research" explained the different types of albinism and the genes involved, vision problems and why they occur in people with albinism.
Next, Purificación Párraga and Mónica Puerto presented the Erasmus + project entitled "Together we can overcome barriers: Strategy for the equity inclusion of young people with albinism at the center and in the classroom". This project, coordinated by ALBA and involved collaboration with the associations of people with albinism from Italy (ALBINIT), Norway (NFFA) and Denmark (DFFA). The project involved gathering knowledge and exchanging experiences on the educational experience of students with visual impairment, including adaptations used in different European countries for the inclusion of people with albinism in primary education classrooms. It will result in the publication of two guides.
Next, the dermatologist Lorea Bagazgoitia and the pharmacist Mafalda Soto responsible for the KiliSun project (Beyond SunCare), attendees of the conference, shared their experience with albinism and their projects of support, education, awareness and local production of sunscreen cream in Africa.
There was also a talk addressed especially to people with albinism by Javier Andrés entitled "Social Networks and Albinism: BREAKING MYTHS - Advice, strategies and formulas for a better control of popularity and privacy".
Mr. Luis Leardy -Director of communication and external relations of the Spanish Paralympic Committee (CPE)- and Mrs. Marta Arce -paralympic sportsman and paralympic trainer- spoke about "Paralympic athletes, a showcase of people with disabilities before society". Luis Leardy highlighted the importance of sport for people with disabilities and how Paralympic games are increasingly visible. Marta Arce talked about her experience of self-improvement helped by the practice of judo, becoming a Paralympic champion.

ROUND TABLES
To end the day on Saturday, a round table was held entitled "In first person" where 4 people with albinism of different ages (Guayarmina Cabrera, Maria Angeles Sauce, Txell Playà and Javier Andrés) talked about their experiences and how they have broken myths about albinism.

Round table about albinism "In first person"

There was also a round table where the different projects and activities carried out by ALBA and the new projects for future years were discussed. Special emphasis was placed on the Project on awareness in the educational environment called “Do you see it?” that has been reproduced in several schools attended by children with albinism. The children's parents: Ana Heredia, Raquel Pérez and Antolín Sandoval told us about the experience and how to organize it.

OTHER ACTIVITIES
The book "What is albinism?" By Dr. Lluís Montoliu, with photos by Ana Yturralde was also presented. The book has been published by ALBA and by CIBERER.

The book "What is albinism?" By Dr. Lluís Montoliu

Another of the most exciting moments of these days was the premiere of the new documentary film "Breaking Myths", presented by its director Patty Bonet, along with Miguel Camino, from "Flare Productions". The documentary is the result of the Erasmus + project "BROKEN MYTHS: A LOOK OF THE ALBINISM" promoted and coordinated by ALBA and with the collaboration of Albinit (Italy), Genespoir (France), NOAH (Germany) and NFFA (Norway). As its title indicates, this short film aims to break myths, overcome barriers and prejudices and show that limits are set by oneself.
Sunday was a day dedicated to the ALBA Association, with the General Assemblies, first an Extraordinary one (to update and approve the new bylaws) and then the Ordinary one, where the activities report and the annual accounts were presented, as well as the renewal of the Board of Directors.
Other activities held over the weekend were the 3rd National Meeting of Youth with Albinism or the 4th ALBA Junior workshops, where young people with albinism aged 8 to 17 years old debated about possible social problems or difficulties of autonomy that they encounter in their day to day lives, and shared experiences that can serve to help others.
On Sunday also, simultaneously with the assemblies of the association, an "Intergenerational Meeting" was held that brought together all the people with albinism in a single room and where the elders presented strategies that had been used by them and answered the concerns of the younger participants.