The first Unit was established by MDA Hellas in 2002 for children living with NMD  and is located at the “Agia Sofia” Children’s Hospital in Athens. 

The Unit that provides medical services in 300 children, is staffed by a Multidisciplinary medical team consisting of personnel of the hospital in independent premises, thoroughly renovated and equipped with state-of-the-art technology by MDA Hellas.

It was founded with the financial support of our sponsors: Lavipharm Group, Siemens S.A. Electrotechnical Projects & Products, George and Kaity David, the Thanassi’s Lavidas Family, Coca-Cola Hellas and Frigoglass S.A. The operating costs are covered by the A. G. Leventis Foundation.

Our members are assessed  holistically through complete clinical and paraclinical examinations (spirometry, electrocardiogram, etc.) that are conducted on a weekly basis every Wednesday morning.

On the remaining days, medical emergencies of each specialty are monitored by appointment. 

More specifically, the Unit is staffed by the following medical specialists:

• Neurologist
• Cardiologist
• Pulmonologist
• Orthopaedic
• Psychiatrist
• Physiotherapist
• Nurse
• Social worker

CLINICAL TRIALS

A Study on Safety and Effectiveness of Long-term Treatment With Vamorolone in Boys With Duchenne Muscular Dystrophy (GUARDIAN)

SNT-IV-VAM-011 (Status: Ongoing) – NCT06713135

Open-label study to collect information on the safety and effectiveness of long-term treatment with vamorolone in boys with Duchenne muscular dystrophy who have completed previous studies with vamorolone.

A Study to Learn More About How Well Finerenone Works, How Safe it is, and How it Moves Into, Through, and Out of the Body Compared to Placebo When Taken With Standard Treatment in Children With Heart Failure and Left Ventricular Systolic Dysfunction (FIORE)

BAY 94-8862 / 21466 (FIORE) (Status: Ongoing) – NCT07188805

Multicenter, randomized, double-blind, placebo-controlled Phase 3 study to investigate the efficacy, safety, and pharmacokinetics/pharmacodynamics of finerenone, in addition to standard of care, in pediatric patients aged 6 months to <18 years with heart failure (HF) and left ventricular systolic dysfunction (LVSD).

A Study to Learn More About How Safe Finerenone is, When it is Taken for a Longer Time With Standard Treatment, in Children and Young Adults With Heart Failure and Left Ventricular Systolic Dysfunction

BAY 94-8862 / 21467 (FIORELLO) (Status: Ongoing) – NCT07192952

Open-label, single-arm extension follow-up study to evaluate the safety of finerenone, in addition to standard of care, in pediatric patients with heart failure, from birth up to 18 years of age, with left ventricular systolic dysfunction (LVSD).

A Study to Assess the Efficacy and Safety of Viltolarsen in Ambulant Boys With DMD (RACER53)

NS-065/NCNP-01-301 (Status : Completed) – NCT04060199

Randomized, double-blind, placebo-controlled, multicenter Phase 3 study to evaluate the efficacy and safety of Viltolarsen (exon 53 skipping therapy) in ambulatory boys with Duchenne Muscular Dystrophy (DMD).

A Study to Assess the Safety and Efficacy of Viltolarsen in Ambulant Boys With DMD (RACER53-X)

NS-065/NCNP-01-302   (Status: Completed) – NCT04768062

A Phase 3, multicenter, open-label extension study in boys with DMD who have completed the 48-week treatment period with either Viltolarsen (exon 53 skipping therapy) or placebo in Study NS-065/NCNP-01-301.

A Study to Assess the Efficacy and Safety of Vamorolone in Boys With Duchenne Muscular Dystrophy (DMD)

 VBP15-004  (Status : Completed) – NCT03439670

A randomized, double-blind, placebo- and active-controlled, parallel-group Phase IIb study with a double-blind extension to evaluate the efficacy and safety of Vamorolone in ambulatory boys with Duchenne Muscular Dystrophy (DMD).

Registry of Translarna (Ataluren) in Nonsense Mutation Duchenne Muscular Dystrophy (nmDMD)

 PTC124-GD-025o-DMD (Status: Completed) – NCT02369731

Long-term observational study of the safety and effectiveness of TRANSLARNA in routine care.

NIS-GEN-SMA-001 (Status: Completed)

Retrospective and prospective observational registry to investigate the epidemiology, clinical profile, and therapeutic management of patients with Spinal Muscular Atrophy in Greece.

Should you require any further information or you would like to schedule your appointment, please contact Ms Penny Panagopoulou at 2107482334 or 2132013656 or via e-mail at  unitmn@otenet.gr 

The Neuromuscular Diseases Unit in Thessaloniki is the second Unit established in our country and serves 490 patients, both, paediatric and adult.

It’s foundation was realized through donations made by Mr Dimitrios Kallitsantsis and AB Vassilopoulos S.A.

 The Unit is affiliated with the 2nd Pediatric Clinic of the Aristotle University of Thessaloniki, at the University General Hospital of Thessaloniki AHEPA  and has been providing its services since September 2007, under the support of the Piraeus Bank.

The Clinic is currently directed by Professor of Pediatrics–Pediatric Endocrinology, Dr. Asimoula Galli-Tsinopoulou, while the Scientific Director is Professor of Pediatrics–Pediatric Neurology, Dr. Evangelos Pavlou.

Within its fully equipped facilities, patients from all over Northern Greece as well as from Thessaly, Epirus and the islands of the North Aegean are assessed through a holistic approach . 

The Unit’s mission is to meet the medical (diagnostic and therapeutic) needs of patients residing in Northern Greece, as well as to provide social and psychological support to both patients and their families.

The Unit’s specialized outpatient clinics operate every Monday and Thursday morning, as part of the Hospital’s Regular Outpatient Department schedule, and are staffed by two Multidisciplinary teams, depending on the patients’ age.

There is a team which is responsible for patients under the age of 16, and a second team responsible for patients over the age of 16, ensuring the continuity of care during the critical transition period from childhood to adult life.

Specifically, for patients under 16 years of age, the Unit provides the following specialties:

• Pediatric Neurologist
• Pediatric Pulmonologist
• Pediatric Cardiologist
• Pediatric Orthopedic Surgeon
• Pediatric Psychologist

For patients over 16 years of age, the Unit provides:

• Neurologist
• Pulmonologist
• Cardiologist
• Orthopedic Surgeon
• Psychologist

Scientific staff to further support both patient groups include:

• Medical Geneticist
• Physiotherapists
• Nurse

On the remaining days of the week, patients are examined by appointment following coordination with their treating physicians, either to receive specialized treatments or as part of a structured close-monitoring program following their therapeutic regimen. Additionally, on non-outpatient clinic days, scheduled patients attend for genetic testing, including blood sample collection for dispatch to specialized genetic laboratories.

For all patients attending the Unit, a complete and up-to-date medical record is maintained. During each visit, patients undergo a full medical evaluation, including clinical assessment by physicians as well as medical and paramedical tests such as spirometry, electrocardiogram and ultrasound. Whenever it is deemed necessary by the treating physicians , further assessments are performed, including electromyography, nerve ultrasound, blood tests, and X-rays.

Furthermore, at the AHEPA University Hospital, there is the capability for prompt scheduling of DEXA scans, cardiac MRI and swallowing tests for both pediatric and adult patients, as well as hospital admissions to the 2nd Pediatric Clinic or the 1st Neurology Clinic, depending on the patient’s age.

The overmentioned holisitic care provided to patients combined with the collaborations the specialized physicians maintain with genetic centers in Greece and abroad, contribute significantly to the diagnosis of new patients under investigation for neuromuscular diseases, as well as to reducing the critical waiting time for diagnosis, both medically and psychologically.

Patients and their caregivers are also provided with information and guidance on practical and administrative matters related to benefits and rights of persons with disabilities, as well as assistance with medical and administrative documentation. Particularly important is the support offered by all Unit staff to patients and their caregivers throughout the different stages of the disease and the challenging process of adaptation.

 CLINICAL TRIALS

Long-term observational study of ATALUREN (PTC124) on safety and effectiveness in routine care.

Retrospective and prospective observational registry investigating the epidemiology and clinical profile of patients with Spinal Muscular Atrophy.

For any further information or to schedule your visit, you may contact Ms. Eleftheria Schoretsianiti at +30 2313 303534 or via email at mnp_axepa@yahoo.gr.

The third fully renovated and equipped by MDA Hellas Unit for people living with NMD is located in the General University Hospital of Patras and was created with the exclusive sponsorship of the Stavros Niarchos Foundation whereas its operations are supported by MDA Hellas.

It began operating on September 2009 with the purpose of serving the needs of people living with NMD in Western Greece, the Ionian Islands and Peloponnese.

In 2019, the Unit received ERN Certification and was recognized as a Center of Expertise for Rare Neuromuscular Diseases.

Professor Elisabeth Chroni, MD, PhD, Director of the Neurologic Clinic and Coordinator of the NMD Unit and the multidisciplinary medical team of the Unit assess patients on a weekly basis which undergo complete medical check-ups accordingly with their condition and the relative Standards of Care.

Our members that count up to 580,  are examined through a holistic approach that includes both clinical and paraclinical assessments (electromyography, peripheral nerve/musculoskeletal ultrasound, spirometry, cardiogram, echocardiogram, etc.) that are conducted during morning hours every Wednesday and Friday. On the remaining days, medical emergencies of each specialty are monitored by appointment.

The Multidisciplinary medical team consists in the below specialties:

• Neurologist
• Orthopaedic
• Cardiologist
• Pulmonologist
• Physiotherapist
• Nurse
• Occupational therapist

If you require any further information or you would like to schedule your appointment, please contact Nikos Kasdaglis at 2613 603251 or via e-mail at mdapatras@gmail.com

CLINICAL TRIALS

IMVT-1401-2402

Title:
Open-label extension study to evaluate the long-term safety and tolerability of Batoclimab in adults with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
(Open-label extension of study IMVT-1401-2401)

Sponsor: IMMUNOVANT
Status: ACTIVE

ARGX-113-2308
Title:
A randomized, double-blind, placebo-controlled, parallel-group Phase 3 study to evaluate the efficacy and safety of Efgartigimod IV in adults with generalized Myasthenia Gravis who are negative for anti-acetylcholine receptor antibodies
Sponsor: ARGENX
Status: ACTIVE

TAK 881-3003
Title:
A Phase 3, single-arm, multiple-dose study of pharmacokinetic comparability between TAK-881 and HYQVIA in adults with Chronic Inflammatory Demyelinating Polyneuropathy
Sponsor: TAKEDA
Status: ACTIVE

IMVT-1402-2401
Title:
A multicenter, randomized, double-blind, placebo-controlled Phase 2b study of IMVT-1402 treatment in adults with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Sponsor: IMMUNOVANT
Status: ACTIVE

IMVT-1402-3101
Title:
A Phase 2b, multicenter, randomized, double-blind, placebo-controlled study to evaluate the efficacy and safety of IMVT-1402 in patients with mild to severe Myasthenia Gravis
Sponsor: IMMUNOVANT
Status: ACTIVE

Merck MyClad MS700568_0183
Title:
A randomized, double-blind, placebo-controlled, three-arm, three-period Phase 3 study to evaluate the efficacy and safety of a new oral formulation of Cladribine compared with placebo in patients with generalized Myasthenia Gravis
Sponsor: MERCK
Status: ACTIVE

ALXN-MG-501 (MG Spotlight Registry)
Title:
A non-interventional, multicenter registry for collecting real-world clinical data in patients with Myasthenia Gravis (MG), specifically in patients receiving treatment with Ultomiris, aiming to understand disease progression, treatment options, and clinical outcomes
Sponsor: ALEXION
Status: ACTIVE

Should you require further information or wish to plan an appointment, kindly contact Mr Nikos Kasdaglis at 2613-603251 or via email at  mdapatras@gmail.com

With the kind support of the John S. Latsis Public Benefit Foundation and in collaboration with the Administration of the Thriassio General Hospital, MDA Hellas has developed and fully equipped the fourth Specialized Neuromuscular Diseases Unit, which operates at the Thriassio General Hospital of Elefsina, in the premises of the Latsio Burn Centre.

The Unit is operating under the support of the John S. Latsis Public Benefit Foundation.

The Unit began operating on September 2023, with the aim of facilitating the transition of care for patients with NMD from childhood to adult life and to serve adult patients from the wider region of Attica and beyond, providing access to healthcare services through a holistic approach. More specifically, our patients, that count up to 160, are monitored by a dedicated team of physicians during morning hours every Thursday, where they undergo thorough evaluations through a wide range of clinical and paraclinical examinations (electromyography, nerve/muscle ultrasound, spirometry, electrocardiogram, echocardiogram, etc.)

Additionally, by appointment, emergency outpatient services are also provided on the other week days.

A key element of healthcare provision is the delivery of highly specialized services by a multidisciplinary team, whose members are trained and dedicated to the investigation and support of patients with neuromuscular diseases, monitoring their progress and maintaining fully updated medical records.

More specifically, the Unit includes the following specialties:

• Neurologist
• Orthopedic Surgeon
• Cardiologist
• Pulmonologist
• Psychologist
• Physiotherapist
• Speech Therapist
• Occupational Therapist
• Nurse

For any further information and to schedule your visit, you may contact the Unit coordinator, Ms. Artemis Dede, at +30 210 5516062 or via email at mnpthriasio@gmail.com.