Attending the Neuromuscular Diseases’ Day in Turin

gmn2022

We attended the GMN 2022 in Turin coordinated by Prof. Tiziana Mongini (Simple Structure for Neuromuscular Diseases – Department of Neuroscience, University of Turin) and Prof. Dario Cocito (Maugeri Clinical Scientific Institutes – Turin), with the participation of Dr. Franco Ripa, head of Health and Social Health Services Planning of Piemonte Region.

“Attending this important occasion of exchange between doctors, institutions and patients, as well as a moment of updating on the diagnosistherapy and management of these kind of diseases which are still almost all untreated, has become increasingly interesting year after year for the over 4,000 neuromuscular patients from Piemonte and Valle D’Aosta affected by 350 different pathologies underlined Luisa Perrero, our delegate.

Topics covered by authoritative specialists focused in particular on diagnostic pathways, telemedicine, advances in innovative short- and long-term therapies.  Furthermore, all the speakers partecipated in the Round Table , centered on the theme “Hospital-Territory Relations, from the PDTA to the Regional Network “, together with the Patients’ Associations who had the opportunity of making their demands and testimonies.

“In particular, as an Association, we were able to make our claims before through the Consultation for Neuromuscular Diseases, by our spokesman  Franceso Ieva, and then through an intervention at the Round Table together with the Mitocon Association for mitochondrial pathologies.

This last joint intervention was much appreciated, as we were able to repeat two important needs: first that our pathologies, all very rare, need to be better known by general practitioners and emergency room operators, then that coenzyme Q10 supplements, very important for all mitochondrial patients (especially for those suffering from optic atrophy) need to be provided free of charge with the therapeutic plan, something that is currently impossible in the Region of Piemonte and in many others.

We were able to highlight the peculiar condition of those suffering from  CMT2A, a kind of Charcot-Marie-Tooth due to the mutation of Mitofusin 2. The fact that Mitofusin 2 is a mitochondrial protein places our patients in a  very complex situation, with problems common to both neuromuscular and mitochondrial diseases. For this reason we believe that the collaboration of the Mitofusina 2 Project with Mitocon can lead to very interesting actions and results for both associations”.

In this regard, during the Round Table, Prof. Mongini, leading expert on CMT and neuromuscular diseases in Piemonte, strongly reaffirmed the need for free supply of coenzyme Q10 supplements (which she had already spoken of in her speech on the MITOCHONDRIAL MEDICINE) as there are no other treatments for these pathologies, and Dr. Ripa has made himself available to undertake the necessary actions in the health care of Piemonte.

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