Today, thanks to an amazing team at the Joubert Syndrome & Related Disorders Foundation, Joubert syndrome takes a spot on the national stage for rare diseases as JS-LIFE is officially launched!! It is a huge accomplishment for our Joubert families to be able to share their experiences, concerns, and hopes of better awareness and treatments on a global scale. They have been given the voice they so desperately deserve to allow researchers to better target their studies and develop new and better methods of diagnosis, treatment, and prevention of complications that can be fatal in Joubert syndrome and related disorders. To our families: thank YOU for allowing us the chance to make a difference for YOU and your loved ones. Your efforts will ripple well into the future! — via Joubert Syndrome & Related Disorders Foundation jsrdf.org/JSLIFE
Posted on: Mon, 15 Sep 2014 17:58:33 +0000
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