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I would first say...to breathe. It can be very overwhelming to receive a new diagnosis...and with a 'rare' diagnosis...it can seem mind-numbing. Join the Osteopetrosis group on Facebook (https://www.facebook.com/groups/osteopetrosis/) for those suffering from any form of this disease. We share our stories, we answer questions, we do all we can to try to help your through your journey with Osteopetrosis. There are almost 400 members..which is amazing due to how rare this disease is...and it's a wealth of information for us as patients.