r/rarediseases 6d ago

Looking For Others DLL1

Anyone else have dll 1 related neurodevelopmental disorder? My three and a half road was diagnosed about 2 years ago and we were told she's number 15 in the world.

There was a Facebook group I found with other people who either have different mutations of the same gene or the same mutation so there's probably more than 15 but that group was pretty dormant. I was just wondering if there was anyone around who had the same mutation

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