Mercedes Serrano, MD PhD – ” e-PACIBARD”
MD PhD Child Neurologist, Clinical Researcher U-703 Centre for Biomedical Network Research on Rare Diseases (CIBERER) Hospital Sant Joan de Déu, Barcelona
“The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals: a booming story of sugar trees”. 1-2 September 2013, Barcelona.
Families and professionals, (clinicians, clinical and basic researchers, biologists, chemists and pharmacologists …) had the opportunity to share their knowledge and experiences. The participants were: · 43 families from 17 countries: Australia, Belgium, Brazil, Canada, Czech Republic, Denmark, England, Finland, France, Germany, Italy, Israel, Norway, the Netherlands, Portugal, Spain, Sweden and USA. · 71 professionals from all the continents and from 25 countries. Our main objectives were:
(1) strengthening global awareness of these diseases,
(2) fighting geographic isolation that impacts families and professionals,
(3) sharing knowledge and experiences,
(4) potentiating visibility of the work performed by patient representatives and professionals and
(5) identifying areas in which international collaboration can have an immediate impact on the life quality of these families.
This event was very special since it was organized by a committee consisting of worldwide patient representatives and professionals. It should be noted that this congress was a satellite meeting of the 12th International Congress of Inborn Errors of Metabolism. The official photographer of the event, Marisa de Andrés, completed a book of photographs dedicated to the event. Please find it at: http://blur.by/1c8XyPD