2nd Duchenne Patient Academy
Συγγραφέας iator Γράφτηκε στις ,
WDO Data Foundation, WDO & MDA Hellas
The 2nd Duchenne Patient Academy was hosted in Greece for the second time by the WDO Data Foundation (World Duchenne Organization) and MDA Hellas, a non-profit organization for the care and welfare of those afflicted with Muscular Dystrophy in Greece.
The Duchenne Academy, that took place in Athens from November 23rd to 25th, 2018, was focused on Duchenne patient representatives – Μembers of Patient Organizations from Africa, Australia, Europe, South America, and the Middle East. Participants have arrived from Argentina, Australia, Cyprus, Czech Republic, Finland, France, FYROM, Germany, Hungary, Israel, Italy, Kenya, Mexico, Lebanon, Lithuania, Netherlands, Romania, Russia, Serbia, Slovenia, Spain, Sweden, Switzerland, Turkey, the United Kingdom and of course Greece.
The Data Foundation and WDO representatives presented and explained the Duchenne Map Project, the Certified Centers Program and all the materials of WDO concerning the disease and the correct application of the standards of care with an extensive discussion on newborn screening. There was also the presentation of the Scientific Director Committee Program from the Representative of the Spanish Organization.
During the workshops, there was an analysis and thorough discussion on the difficulties challenging each organization in the respective country with the aim to identify needs and to develop the best practices to meet them.
Moreover, a workshop took place with an interactive education concerning the strategy outline for the future and the appropriate and efficient way of defending patients’ rights.
Last but not least, the latest developments in the Duchenne Muscular Dystrophy Protocols were presented, while executives from pharmaceutical companies, such as Italfarmaco, PTC Therapeutics, Roche, Santhera Pharmaceuticals and Sarepta Therapeutics, reported the progress in international research.
Platinum sponsor: Lavipharm
Silver Sponsor: Pfizer
Supporters: Aliv, Zealots of Nature
