5th International Conference: Care of patients with Muscular Dystrophy, especially Duchenne type

May 17th 2023

Hotel Golf, Prague

We would like to invite you to the 5th International Conference: Care of patients with Muscular Dystrophy, especially Duchenne type. Our goal is to connect patients, their families, professionals and pharmaceutical industry so patients with any type of muscular dystrophy are provided with the best possible care.

The conference will take place

on May 17th 2023


Hotel Golf, Plzeňská 103, Praha 5

The guarantor of the conference is Jana Haberlová, MD, PhD

Organizers of the conference are:



Department of Paediatric Neurology, Motol University Hospital


Second Faculty of Medicine, Charles University

For further information please contact:

Karolína Podolská - program, guest speakers, pharmaceutical companies podolska@parentproject.cz

René Břečťan - accommodation, logistics brectan@parentproject.cz

Program of the conference:

First session 9:00 - 10.40

Health Care of Patients with Muscular Dystrophy


Welcome - Ing. Jitka Reineltova - CEO of Parent Project Czech Republic (CZ)

09:00 - 09:20

Organization of pediatric clinical care in Czech, neuromuscular centers - Jana Haberlova, MD, PhD

09:20 - 09:30

Coordination of adult DMD Care in CZ - Karolína Podolská, MD

09:30 - 09:45 

Non-invasive ventilation in adults with DMD - Simona Dostálová, MD, PhD

09:45 - 10:05

How does hormonal state affect the quality of life in boys with Duchenne? Claire Wood, MD

10:05 - 10:20

Nutritional supplements in DMD: Hopes and facts - ass. prof. Paola Mantuano

10:20 - 10:40


10:40 - 11:00

Coffee Break

Second Session 11:00 - 12:30

Advocacy + social care

11:00 - 11:15

What is advocacy, why is it important and how to become a patient advocate? Ing. Jitka Reineltová 

11:15 - 11:40 

PPMD - Building a community - Pat Furlong

11:40 - 11:55 

Relationship between patient and personal assistent - Erik Čipera

11:55 - 12:10

How can the state help patients with NM diseases? - Klára Šimáčková Laurenčíková

12:10 - 12:30


12:30 - 13:30


Third Session 13:30-15:20


13:30 - 14:00

How to understand therapeutic landscape for muscular dystrophies and what to expect? Karolina Podolska, MD

14:00 - 14:15 

 Drug reimbursement system in the CZ - Ing. Rene Břečťan

14:15 - 14:45     

Panel discussion 

14:45 - 15:00

Respiratory physiotherapy

15.00 - 15:30

Introduction of workshop topics

15:30 - 16:00

Coffee break

Fourth session 16:00-17:30 

Workshops for families/Round table for professionals

Workshops for families  - Respiratory physiotherapy, Exposure to cold water and its effect on muscles, Power of the voice, Using modern technology to help a DMD patient, How to communicate about the disease

Round table discussion for health care professionals about state of adult care in the CZ


The guests can be accommodated at Hotel Golf. Due to limited capacity, please contact us at brectan@parentproject.cz to book a hotel room. The price for a single-room is approximately 120 euro/night and for a double-room 130 euro/night.


To attend the conference please register by filling out this information:

  • Patient
  • Patient Organization
  • Professional
  • Parent of a patient
  • Other
Dietary restrictions *