When: on 1 September 2013
The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals as a part of the programme of the 12th International Congress of Inborn Errors of Metabolism.
The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals will bring together the healthcare professionals who study the scientific and medical aspects of this growing family of diseases, and the patients with their families. “This conference is particularly important” said Vanessa Ferreira, sister to an affected patient. “Advances in technology are going to have a profound impact on the CDG field, causing a rapid growth of our knowledge on the types of CDG and on the variability of their clinical spectrum”.
The conference will cover topics relevant to a better understanding of these rare diseases by the affected families. There will be state-of-the-art presentations on clinical care, on biochemical and genetic diagnosis of CDG, on therapeutic approaches, on animal models and on current supportive therapies.
Several leading healthcare professionals will participate. Professor Jaak Jaeken, will deliver a keynote speech about the main aspects of CDG knowledge acquired in the past, with messages for the future.
This unique conference promises to motivate, educate and promote sharing and participation, built on the success of previous conferences organized by the Portuguese Association for CDG and other rare Metabolic Diseases (APCDG-DMR).
“The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals: a booming story of sugar trees” “aims to share experience and to unite families from different regions and countries. In addition, this conference will be the first in which several CDG patient representatives and professionals from all over the world will be involved in the organization and coordination of the conference”. said Vanessa Ferreira.
The organization encourages experts on metabolic diseases to attend, especially those that have families affected by CDG. There are oral communications on 6 themes, designed to foster reflection and discussion amongst CDG families and professionals.
We're very excited! Hopefully, at least Matthew and I will be able to attend this conference!