DMD care in the Czech Republic

Care Centres

There are five centres in Czech Republic which specialize in care for DMD patients. These centres are:

doc. MUDr. Petr Vondráček, Ph.D.; MUDr.Lenka Mrázová
Klinika dětské neurologie
Fakultní nemocnice Brno
Pracoviště dětské medicíny
Černopolní 9, 625 00 Brno
tel. 532 234 934, 532 234 912 , e-mail: neurovon@volny.cz, lenka.mrazova@fnbrno.cz

MUDr. Jana Haberlová, Ph.D.
Klinika dětské neurologie 2. LF UK
Fakultní nemocnice v Motole
V Úvalu 84, 150 06 Praha 5
tel.: 224 433 301 , e-mail: jana.haberlova@gmail.com

as. MUDr. Dana Šišková
Ambulance pro nervosvalová onemocnění
Oddělení dětské neurologie
Fakultní Thomayerova nemocnice s poliklinikou
Vídeňská 800, 140 59 Praha 4 – Krč, e-mail: dana.siskova@ftn.cz

MUDr. Jan Staněk
Klinika dětské neurologie
Fakultní nemocnice s poliklinikou
17. listopadu 1790, 708 52 Ostrava, e-mail: jan.stanek@fno.cz

Prof. MUDr. Soňa Nevšímalová ,Dr.Sc; As. MUDr. Iva Příhodová, Ph.D
Centrum pro nervosvalová onemocnění
Neurologická klinika 1. LF UK a VFN
Kateřinská 30, 128 21 Praha 2, e-mail: sona.nevsimalova@lf1.cuni.cz; iva.prihodova@lf1.cuni.cz

Examinations at the Children's Neurology Department at the University Hospital Brno are arranged as short-term hospitalizations once per year, during which patients undergo an examination by a neurologist, a cardiologist, and an orthopaedist as well as laboratory sampling, spirometry, and physiotherapy - and more according to their individual needs. For further information about the care at the other clinics, please contact them directly (contact details above).

These departments also participate in creating the Czech patient registry, which you can find at http://ready.registry.cz/. If you are a DMD patient and you are not yet registered, please ask your physician for information about this option, or contact MUDr. Mrázová (lenkamrazo@seznam.cz) or Mgr. Pavlovská (pavlovska@iba.muni.cz) from the Institute of Biostatistics and Analyses at the Faculty of Medicine at Masaryk University, which is responsible for the operation of the registry.

Parent Project

In 2001 a registered  non -profit organization called Parent Project was set up, run by parents of children diagnosed with Duchenne (DMD) and Becker (BMD) Muscular Dystrophy.
Its main activities include:

  • Financially supporting research and future treatment of DMD/BMD in the Czech Republic. Obtaining money from public and private organizations to support the aims of the organization.
  • Sharing information about research in the field of neuromuscular disorders with parents and doctors.
  • Organizing workshops and training, issuing professional publications and providing an online advisory service for parents.
  • Together with Masaryk University in Brno, creating a registry of patients with DMD/BMD in the Czech and Slovak Republics.
  • Investigating how best to allow patients to join relevant clinical trials in Czech Republic and abroad.
  • Cooperating with patient organizations in other countries.
  • Supporting families with DMD/BMD children. Organizing a yearly meeting for parents and children to help each other.
  • Improving the quality of life of DMD/BMD patients and their integration with other children and wider society.

You can find more information at the website: www.parentproject.cz

29/11/2011