NO MYOLYSE
MÉDIAS
MEDIA
30 of Jan 2021
Thanks and explanations on the researches by Professeur Pascale De Lonlay, head of pediatric metabolic diseases at Necker hospital, coordinator, clinician and investigator in research projects.
Lipin1 is a disease for which 2 treatments are now available.
Tango2 is a disease which physiopathological mecanism is now better known.
Associations of patients like No Myolyse contribute to the progress of research in founding the salaries from the researchers!eurs !
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Published on Sept. 15th 2020 in JIMD (The Journal of Inherited Metabolic Disease).
It concerns the fundamental research currently underway in Paris on rhabdomyolysis and Tango2 disease.
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This official journal aims to improve communication between field workers around the world, management and understanding of inherited metabolic disorders.
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It regularly publishes original research results and new or important observations concerning any aspect of inherited metabolic diseases.
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CONCLUSION:
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We conclude that TANGO2 disease is a life-threatening condition that requires specific cardiac management and anesthesia protocol.
Mechanistically, it is unlikely that TANGO2 disease originates from a primary mitochondrial defect.
Rather, we suggest that mitochondrial defects are secondary to strong extrinsic triggers in TANGO2-deficient patients.
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https://onlinelibrary.wiley.com/doi/10.1002/jimd.12314
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Dr. Sebastian Montealgre, Dr. Pascale de Lonlay, Dr. Felix Distelmaier and Dr. Michael Sacher joined the social media editor to explain what they observed and the consequences of these findings. Listen:
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A big thank you to Professor Pascale De Lonlay, head of the department of pediatric metabolic diseases at Necker Hospital, coordinator, clinician and investigator of research projects, for this video to benefit our association.
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Professor Pascale de Lonlay is the referent doctor of No Myolyse.
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Our main goal is to be part of the dynamic of the fundamental research in France on rare genetic disorders like Tango2 and quickly find a cure agains rhabdomyolysis.
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Article Midi Libre : No Myolyse, une association pour combattre la maladie!
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Article La Provence: Angélique, Renaud, Romane et Elia disent "Non à la Myolyse!"
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