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.