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On the occasion of World Day for Rare Diseases, the Management Committee, of which AELALD is a part, is organizing its 16th edition on Tuesday, February 28, from 9:30 am to 3:00 pm at La Pedrera – Casa Milà (Pg. de Gràcia, 92, 08008 Barcelona).
The motto chosen from Europe for this 16th edition is "Everyone deserves equal opportunities and access to health care", which emphasizes that everyone deserves equal opportunities and access to health care. In Catalonia, under the motto "Together we make pineapple", we value the need to carry out training and informative actions to promote a more inclusive and empathetic society, and to provide the affected people and their environment with tools, so that they are informed and increasingly participate in decision-making in matters of ethics, research and access to medicines.
This informative Day unites the voices of those affected, health professionals, researchers and researchers, and institutional representatives, to inform about minority diseases and give visibility.
WHAT IS THE OBJECTIVE OF THE CONFERENCE?
Increase equity for people living with rare disease and their families. The World Day is an opportunity to make society aware that people living with a rare disease throughout the world suffer from unequal access to diagnosis, treatment, care and social opportunities”, according to Rare Diseases. Day.
Together Fem Pinya – Structure of the day
The Conference starts with an opening table, followed by three-voiced witnesses who, for yet another year, will convey to us the day-to-day difficulties and needs of people who are affected by a rare disease and their families.
The first session is dedicated to equity in access to highly complex treatments. The processes of access to highly complex treatments will be discussed.
The second session is dedicated to equity in the different stages of life. A vision will be given from the needs of a child with a minority disease in education, well-being and health issues. The transition from pediatrics to adults and the needs in these three areas in adulthood.
At the end of the day, the recognitions that the World Day Management Committee awards to professionals who stand out for their career and professional commitment in favor of minority diseases will be delivered.