Delighted that such a community exists given the rarity of the syndrome which some of us here have. Congratulations and huge thanks to its founder! Your commitment is admirable and your information so precious! I just wanted to say this for today: we are not alone! I'm coming back soon to share my own journey with Clarkson. In the meantime take good care of yourself. Solidarity!

Hello, every patient who finds the rareshare site is lucky for the entire community.  Once again I share my thanks to Arturo, and I share his words.  I hope you tell us soon your experiences.

 Ariel since Argentina.