A quick note to say that I’ve put a new page on the site. As part of the conversations I had with Retrophin staff, and observations of information provided to me via e-mail, it was a stark reminder that nowhere on the site did I have a single place to go to get information on the steps to take if someone is facing a potential CTX diagnosis. To satisfy that need I have created a page that describes the steps that one should take in this process. I provide information on testing labs for both blood and genetic testing, website and contact information for Centric Health Services, and a blurb and link to the Inspire CTX community where one can interact with other CTX patients. Lastly, Dr. Andrea DeBarber at OHSU, who is working toward developing a newborn screening test has allowed me to provide her e-mail as a contact for those who might have other questions. You can get to it by clicking the Diagnosis and Treatment menu item above.
Posted in Updates.