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Bardet Biedl Syndrome Foundation

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

Good News and Bad News

It's a weekend of good news, and probably bad news.

On the good news front, Rhythm has received approval to begin enrolling patients for the Phase III trial of setmelanotide. You can read more about the trial inclusion and exclusion criteria and get details on how to register interest at the NIH’s Clinical Trials site.

On the probably bad news side: a Chinese doctor/research institute has just announced that they have conducted CRISPR in human embryos and the twin babies were carried successfully to term. It remains to be seen whether this is in fact true, but even it not that is likely to start a backlash and wave of regulations and prohibitions that could set back CRISPR research in the US and Europe for many years, while driving research undrground and into countries with much fewer safety controls and regulations. You can read more about the purported CRISPR babies here.