CMT: between hope and reality is the title of the Congress organized by CMT France last March, 25 in Poitiers.
“This year we can finally talk about hope” said Daniel Tanesse, Vice President and Head of the Congresses the association regularly organizes every year to gather its members and talking about important issues concerning Charcot-Marie-Tooth disease. “Hope which leads us to undertaking scientific studies for the care and treatment of our disease“.
There are, in particular, four ongoing clinical studies the CMT France is official partner of which have been described at the Conference taken place in the centre of the France. The first three are about CMT1A:
- a project, currently in the Phase III (the final one) of the trial, which concerns the medicine PXT-3003 at the laboratory Pharnext ;
- another one in phase II regarding the medicine Ulipristal acetate at the CHRU of Strasbourg
- and the one in Phase I of the medicine IFB-088 at the InFlectisBioScience laboratory.
The last one is about CMT1X:
- a research project the CNRS et INSERM of Strasbourg and Marseille have been carrying out.
On one side is hope feeding our desire and positive expectation (a speech on how epigenetic might affect our health has been given), on the other is reality made by “tiredness and pain”, two constants of the daily life people suffering from this rare disease live.
The topic “Tiredness” in Charcot-Marie-Tooth disease has been addressed by the association for the first time in Poitiers Conference, that of the “Pain“, already considered in the past instead, has been developed in a multidisciplinary approach: neurological (“Pain and CMT “), nutritional (” Micronutrition, pain and tiredness in CMT”), and postural (“Posture, balance and pain”).
The sociologist Michel Billé with his speech about “Hope brings to life…” which concluded with a positive note the interventions of the Conference.
You can find more detailed information about the day on the site of CMT France: