CS/EN

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

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 December 1st 2020

in

Vienna House Andel’s Prague, Stroupežnického 21, Praha 5

Organizers of the conference

The conference will be held under the aegis of the Ministry of Health of the Czech Republic.

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 ceskova@parentproject.cz

René Břečťan - accommodation, logistics brectan@parentproject.cz

Jindra Landová - PR, marketing, registration landova@parentproject.cz

Sponzors

Gold sponsors of the conference:

Partners of the conference:

Program of the conference:

First session 9:00 - 10.30

09:00

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

09:00 - 09:30

Organization of clinical care in the CZ, neuromuscular centers - Jana Haberlova, MD, PhD Tereza Dousova, MD, PhD,  Ondrej Soucek, MD, PhD

09:30 - 09:40

Adult DMD Care in CZ - David Kemlink, MD, PhD

09:40 - 10:10 

Adult Care in neuromuscular center in Missouri, USA - Raghav Govindarajan, MD

10:10 - 10:30

How the team works in Parent Project Muscular Dystrophy - Pat Furlong

10:30 - 10:40

Discussion

10:40 - 11:00

Coffee Break

Second Session 11:00 - 12:30

11:00 - 11:40

Preclinical development of drugs - Annemieke Aartsma-Rus, PhD

11:40 - 12:00 

Drug Repurposing - Dirk Fischer, MD

12:00 - 12:10

Current availability of drugs and clinical studies in CZ - Petra Fuchsova, MD

12:10 - 12:20

Legislative point of view on drug approval and reimbursement - Lenka Teska Arnostova, JD, PhD

12:20 - 12:30

Discussion

12:30 - 13:30

Lunch

Third Session 13:30-15:30

13:30 - 13:50

Videos about Czech neuromuscular centers in Prague and Brno

13:50 - 14:00

Clinical care in Brno, CZ - Lenka Jurikova, MD

14:00 - 14:30

Introducing Czech Parent Project and its team and current projects

14:30 - 14:40

Team of early care for patients

14:40 - 15:30

Pharmaceutical companies presentation - Sarepta Therapeutics, PTC Therapeutics, Roche

15.30 - 16:00 

Coffee break

Fourth session 16:00-18:00

16:00 - 18:00

Workshops for families

 - Hipotherapy, Hardening of the body in the cold, Power of the voice, Using modern technology to help a DMD patient

16:00 - 18:00

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

Accommodation

The guests can be accommodated at Vienna House Andel’s Prague Hotel or in Angelo Hotel. 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 *