7/9/2018 – 5th World Awareness Day for Duchenne Muscular Dystrophy (WDAD)
Celebrating the 5th World Awareness Day for Duchenne Muscular Dystrophy (WDAD), MDA HELLAS, Association for the Care and Welfare of those Afflicted with Neuromuscular Disorders, and the Parent Project MDA HELLAS (Parents of children with NMD) organized an event at Technopolis City of Athens last Friday, September 7th.
The event aimed to inform and to raise the public awareness of this rare and incurable until today form of muscular dystrophy that affects boys. Main topic of the lectures was the “2018 International Care Standards”, the latest version of holistic approach to patient care. In this context, speeches by patients and their caregivers, MDA HELLAS’ scientific associates, healthcare professionals and physicians took place this year for the first time. The participants had the opportunity to receive information on the disease and latest data on International Care Standards, and to familiarize with the everyday life and needs of patients and their families living with Duchenne in Greece.
“With 40 active clinical trials, 4 genetic treatments under development, and the first two approved drugs, which delay disease evolution in specific mutations, one in Europe and one in the USA, the Duchenne patient community is closer than ever to the treatment of this rare disease”, said Dimitrios Athanasiou, a representative of Parent Project MDA HELLAS’, a member of the World Parents Association (UPPMD) and father of Hermes, a six-year-old boy with Duchenne.
“Early diagnosis is of paramount importance, as it allows families to offer immediate support to their children, such as physiotherapy, hydrotherapy, medication and proper nutrition, which combined can contribute to the extension of life expectancy”, said Ms. Vana Lavida, President of MDA HELLAS.
Katerina Dalaka, the track champion, attended the celebration, when 500 red balloons were released in the sky, symbolising the 500 boys and men living with Duchenne muscular dystrophy in Greece.
Major Sponsor of the event was Lavipharm.
Sponsor: Roche Hellas
Hosting Sponsors: Technopolis City of Athens
Communications Sponsor: IQVIA
With the kind support of: Begnis Catering, Coca Cola 3E, Palco, Basis & Basis
The evening was musically dressed by the band “Vicky Bee and the Acoustic Troubles”.