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If you are interested in obtaining cell lines or patients samples for FSHD research there are two main repositories of cell/tissue banks.
To obtain cell lines you can e-mail them directly:
Genea Biocells has NIH-approved embryonic stem cell lines that have confirmed genetic diagnosis of FSHD.
The Leiden Open Variation Database is a curated database of mutations for SMCHD1. It is linked to NCBI. Any FSHD-relevant genetic variants should be input into this database.