Within the framework of its scientific work, MDA Hellas organizes medical conferences and speeches on neuromuscular diseases, the aim of which is:

  • To create dialogue, exchange and dissemination of new information and data on the scientific, clinical and psychosocial dimension of neuromuscular diseases
  • To promote collaboration among various actors who are directly or indirectly involved in improving the lives of people suffering from neuromuscular diseases
  • To contribute to the education and empowerment of the human potential dealing with neuromuscular diseases
  • to contribute to the development of effective activities for the therapeutic approach to neuromuscular diseases

3rd Duchenne Patient Academy

WDO Data Foundation, WDO & MDA Hellas

The 3rd Duchenne Patient Academy was hosted in Greece for the second time by the WDO Data Foundation, World Duchenne Organization and MDA Hellas. The Duchenne Academy, that took place in Athens from December 6th to 8th2019 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, Belgium, Brazil, Bulgaria, Canada, Chile, Cyprus, Czech Republic, Finland, France, FYROM, Germany, India, Ireland, Israel, Italy, Kenya, Malaysia, Mexico, Lebanon, Lithuania, Netherlands, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sri Lanka, Sweden, Switzerland, Turkey, Ukraine, Unites Arab Emirates, United Kingdom, USA and of course Greece.  Furthermore, representatives from Pharmaceutical Companies attended the Academy and in particular from Italfarmaco, ReveraGen, Sarepta, PTC Therapeutics and Roche. For the first time, in this Academy there were two ARMs, as they were called. One ARM included experienced advocates and the other the new advocates, who were trained by the others.

During the Academy and every interactive seminar, EMA matters and the role of Patient Organization Representatives in the Agency, clinical trials and their future, CRO’s role in them, EU funded Programs and how to approach and take part. Additionally, experts showed how to find reliable information and articles with new, objective and updated information. During training, central role in the training had the seminars of advocacy and fundraising methods.

Presentations of every program running by the WDO were held, the psychosocial project, the Duchenne Map and its demo, the Vamorolone clinical trial (phase IIb) and every next step. In addition, every info and any update in the standards of care.

MDA Hellas sponsors: Lavipharm, Innovis Pharma

October 5, 2019: “Spinal Muscular Atrophy – the next day”


MDA HELLAS, Association for People with Neuromuscular Diseases, organized an open Scientific Event about “Spinal Muscular Atrophy – the next day”. The event took place on Saturday, October 5th, at the Royal Olympic Hotel where speeches by patients, scientists, doctors and caregivers were held. The event aimed to inform and to raise the public awareness of this rare neuromuscular disease.


The central theme of the event was Spinal Muscular Atrophy, its symptoms in every type, treatment, pharmaceutical achievements in the last years and the importance of preimplantation control prevention.

Nusinersen’s contribution to the treatment and improvement of symptoms was particularly emphasized, the latest pharmaceutical approaches expected in the near future were mentioned.


Mrs Vana Lavidas, President of the Board of Directors of MDA Hellas, pointed out: “Today’s event was unprecedented and very important for the community of our members with Spinal Muscular Atrophy. The primary purpose of this event was to inform our members and with the Medical Doctors, to exchange experience and knowledge, sealed by promising and optimistic messages, as well as to highlight the importance of prevention through prenatal screening. “


Member of the European Parliament, Mr. Stelios Kympouropoulos, Psychiatrist-Sexologist, Member of MDA Hellas, attended and spoke about his personal experience in living with Spinal Muscular Atrophy.


Sponsor: Genesis Pharma

Spinal Muscular Atrophy (SMA) is a genetic, progressive and often life threatening, rare disorder affecting the ability of walking, feeding and eventually breathing. It affects 1:10,000 people at birth and the symptoms can appear in any age with a variety of severity. Newborns and babies present the most severe type leading to paralysis and preventing basic functions such as swallowing. If onset starts later during childhood and adulthood, patients present with other more frequent types of the disorder and lead to severe muscle weakness and disability.



7/9/20196th World Awareness Day for Duchenne Muscular Dystrophy (WDAD)

In the context of celebrating the 6th World Duchenne Awareness Day (WDAD), on 7 September, MDA Hellas, Muscular Dystrophy Association of Greece and Parent Project organized an event in the House of MDA. Its goal is the notification and awareness for this rare and incurable type of muscular dystrophy affecting boys and men.

Main theme of the event was Nutrition in Duchenne Muscular Dystrophy and highlighting its importance for avoiding complications of the disease. Speeches by parent, scientific collaborators of MDA hellas, doctors took place, analyzing basic principles of balanced diet, skeletic and only, complications, avoiding them, and suggestion of daily and easy recipes from families.

Mrs Vana Lavidas, President of MDA Hellas, highlighted: “The annual celebration of the World Duchenne Awareness Day is of great essence, since each year it is a great opportunity for scientific discussion that enlighten and provide solutions to daily patient problems, inform the public of the disease and empowers our society by broaden us.”

As every year, red balloons were released symbolically in the sky, representing all boys and men living with Duchenne Muscular Dystrophy in Greece.


Mr Savvas Poumpouras, friend of MDA, came to the event, and cooked tasteful bars, according to the specialists’ instructions.


Major Sponsor: Lavipharm

Sponsor: Roche Hellas

Supported by: Coca–Cola 3E, Palco

Media Sponsor: IQVIA


MDA Hellas (Muscular Dystrophy Association) began its action in Greece in January 2000, with the belief that a coordinated effort of every angle, state, private sector, as well as citizens, may bring a miracle.

MDA Hellas did not have and does not have any state grant in all the years of its action. Therefore, all its actions have been fulfilled thanks to private initiative. The main source of income for the purposes of MDA Hellas, but also the main way of publishing its work to the public are every year’s organized events.

Duchenne Muscular Dystrophy (DMD) is one of the rarest genetic and lethal diseases affecting 1:5,000 newborn boys globally. It is caused by mutation on dystrophin gene, the largest gene of human genome. Boys with DMD lose their mobility gradually, whereas during adolescence heart muscles and breathing muscles are affecting. Life expectancy rarely οvercomes 25 to 30 years. Lately research has made great progress, giving hope to boys and families, even though a cure does not exist.




Vana Lavidas, President, ΜDA Hellas

17.10   Basic Principles of a balanced diet, Michael Georgoulis, Clinic Dietician, MSc


17.30   Specific dietary advice for Duchenne Muscular, Meropi Kontogianni, Assistant Professor in Clinical Nutrition, Harokopio University

17.45  Dysfagia – Management
Emilia Michou, PhD, CertMRCSLT, Assistant Professor, Department of Speech Therapy, School of Health Rehabilitation Sciences, University of Patras, Vice President of European Society for Swallowing Disorders (ESSD).

18.00   Οrthopaedic complications according to documented Standards of Care of Duchenne Muscular Dystrophy, Dr. George Bozonelos, Auxiliary Αttending Doctor Β’, Α’ Orthopaedic Department, “Aghia Sofia” General Children’s Hospital


18.15   Skeletal health according to documented Standards of Care of Duchenne Muscular Dystrophy,
Dr. Artemis Doulgeraki, Paediatrician, MD, PhD, MRCPCH, Director of Bone disorders and mineral disorders sector, Institute of Child Health

18.30   Hypogonadism in Duchenne Muscular Dystrophy.

Dr. Evelin Panou,Paediatrician – Paediatric Endocrinologist,  University Fellow of A’ Paediatric Clinic of Medical School, University of Athens,  “Aghia Sofia” General Children’s Hospital


18.45   Dietary Advice – Recipes
Dimitra Lionaki- Palioura, Parent


MDA Hellas Coordination: 
Evgenia Oikonomidou, MSc Biochemist, Scientific Advisor, MDA Hellas

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.