CS/EN

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

in

Hotel Golf, Plzeňská 103, Praha 5

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

Organizers of the conference are:

PARENT PROJECT, z. s.

and

Department of Paediatric Neurology, Motol University Hospital

and

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

08:50

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 - prof. Annamaria De Luca

10:20 - 10:40

Discussion

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

Discussion

12:30 - 13:30

Lunch

Third Session 13:30-15:20

Research

13:30 - 14:00

How to understand therapeutic landscape for Duchenne muscular dystrophy and what to expect? prof. Annemieke Aartsma-Rus - prerecorded

14:00 - 14:15 

Presentation of Sarepta Therapeutics

14:15 - 15:00

 Presentations of other golden sponsors of the conference

15:00 - 15:20

Discussion

15.20 - 15:45 

Coffee break

Fourth session 15:45-17:30 

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

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

Accommodation

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.

Registration

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

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