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RESOURCES
ORPHA CODE
647799
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Orphanet code to be filled in or consulted if you are a physician, health care or social welfare professional...
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Orphanet code to be indicated if you are a caregiver or patient
SUMMARY AND DESCRIPTION AVAILABLE IN ENGLISH AND FRENCH
📍 Inform in case of emergency
Practical information
while waiting for the EMERGENCY CARD and SHEET
FRENCH ONLY - Click on the image to read it. Activate the resource links using the underlined words in the document
📍Inform to better understand
As part of the Cross Solidaire event, we produced a video explaining the syndrome and its impact, rare diseases, and the role and achievements of the Extra-vaillants MYT1L association.
US VERSION ON YOUTUBE (click on the underline word)
US PDF version !!!
Click on the image
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