Clearly, we are better together. A record 575 people from 12 countries registered for the 2019 Joubert Syndrome Family and Scientific Conference, which took place
In a way, Roselyn Kanja’s family is lucky compared to other Kenyan families affected by rare diseases. Roselyn lives in Nairobi, one of the
By Chuck Soder The 2017 Race for RARE raised roughly $10,000 for the Joubert Syndrome and Related Disorders Foundation – far more than organizers had anticipated.
It’s been more than a month since the end of the conference, so we figured it was high time (way past high time, actually!) to say
The 2017 Joubert Syndrome & Related Disorders Foundation Family and Medical Conference is fast approaching! It’s happening July 19th-22nd in beautiful Phoenix, Arizona. Conference co-chair
The 1st Annual Race for Rare Virtual 5k is coming this fall! Co-organizers Meghann Grace and Jenni Swenson have been hard at work getting the logistics