During the ceremony will also develop the closure of I Iberoamerican Congress that from the 14th to the 18th will take place in Murcia and associations bring together representatives from more than 10 countries
The next Friday, October 18th, HRH The Princess of Asturias will preside over the closing ceremony of the First Congress of Rare Diseases and the opening of the Sixth National Congress on Rare Diseases organized by the Spanish Federation for Rare Diseases (ERDF) and the Association of Rare Diseases and other severe developmental disorders (D'Genes).
Thus, His Highness put the finishing touch to a week where people from more than 10 countries and can share common rights situation and legal inequalities being experienced by people with rare diseases.
Result of this meeting I was born the Latin American Alliance on rare diseases to work together on actions to share and experience different in each country-driven projects.
VI National Congress of ER
For its part, the VI National Congress to be held in Totana (Murcia), aims to standardize and raise awareness on the situation of people with rare diseases.
It will be the meeting point for more than 200 families who will come to share their life, their history and their experiences.
At the same time, be held Lipodystrophies 1st International Symposium organized by the Association of Family and Affected Lipodystrophies (AELIP).
In order to know and make known the situation to other citizens, expressing the needs and services claiming to benefit those affected.
For years, HRH The Princess of Asturias is very committed to the promotion of research of such diseases and raise awareness of the importance of these diseases to society.
ERDF, D'Genes, and AELIP want to thank HRH the Princess of Asturias, your "involvement, motivation, commitment and affection conveyed to people with rare diseases.
Your support gives us strength and hope.
It encourages us to keep fighting to improve their quality of life. "
Share experiences and feelings
At the opening ceremony there will be a table testimonies of rare diseases, in which four people will speak about their experiences.
In addition, the Mutual Aid Group "Hidden Roles" of the delegation ERDF Extremadura held a theatrical performance.
Meanwhile, Naca Eulalia Pérez de Tudela, President of D'Genes, declares "I am truly honored to have HRH The Princess of Asturias in this inauguration that seeks to be a meeting point for families and experts to share experiences and feelings ".
