Awareness and social communication activities

 

WORLD DAY OF LIPODYSTROPHIES MARCH 31st 

From AELIP, it is considered necessary to carry out actions that have an impact on public awareness and increase sensitivity that make it possible to visualize lipodystrophies as the set of infrequent or low prevalence diseases and the characteristics of them.

For this, it is declared as WORLD DAY OF THE LIPODISTROFIAS on MARCH 31st, reference date to join efforts, from different areas and social entities, to organize activities as a whole to raise awareness of these diseases, their characteristics, treatments, resources for patients, etc. In this same line, the project of a photographic exhibition called "LAS LIPODISTROFIAS LLENAS DE VIDA" (Lipodystrophies full of live) is designed, with the aim of capturing images that give the opportunity to know the daily life of lipodystrophies, and bring us closer people who suffer from them. MORE INFORMATION

THE FLAG OF AELIP ARRIVES DIRECT FROM THE SKY 

This air show performed by the Acrobatics Paratrooper Patrol of the Spanish Air Force (PAPEA) is part of the events supporting AELIP, as part of the activities organized by our Association to mark the World Day of Lipodystrophies. This action is part of the commitment that the Air Force has with the Spanish society, contributing to give greater visibility to our association helping us to improve the quality of life and health of people suffering from these rare diseases.

Hundreds of children from differents schools in Totana are congregated in solidarity in the Municipial Exhibition Center, to witness the PAPEA jump, as well as to form a giant "L", which we photograph from the sky.

 

The Acrobatic Parachute Patrol of the Spanish Air-Force (PAPEA)

CANDLES SUPPORTING THE LIPODYSTROPHIES

Hundreds of candles symbolize the light that should illuminate the future of lipodystrophies

The Balsa Vieja Square in Totana holds the “Velada por las Lipodistrofias” year after year.

Hundreds of candles are put in the Balsa Vieja Square in Totana creating the abbreviations of AELIP, a symbolic way to show the support for people who are living with this pathology.

Many people take part in this event, which has been developing for 5 years and it has the collaboration of the Town Hall and the Illustrious Superior Chapter of Processions of Totana. Among them, members of horns and drums bands of the Holy Week of Totana, support AELIP with their presence in this act.

 RAISING AWARENESS WITHIN FUTURE GENERATIONS

From AELIP we see ourselves in the need to raise awareness and educate the youngest in the problem of rare diseases. Our goal is to provide you with information about WORLD DAY OF LIPODYSTROPHIES, in the most relevant way with playful, clear and especially visual activities.

Therefore, we came up with the idea of staging the process with childish and motivating characters to perform lipodystrophies, research and the healing process.

Every year about 250 children between 3 and 8 years old, in Early Childhood Education, the first and second year of Primary Education take part in this activity. The teachers are responsible for presenting and carrying out this activity in class, where children express themselves, ask questions and paint. Probably, the simplicity of the activity is the key to success, as the children understand it, and the goal of getting the reality of lipodystrophies to the little ones is more than fulfilled.

From AELIP we consider very interesting to hear how parents narrate the explanations that their children give about what they have worked in class, which makes us hope that future generations will be very sensitive and will be very informed about the needs of people with lipodystrophies.

 

LIPODYSTROPHIES GO TO SCHOOL

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