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.

I wanted to put up a note to inform everyone that Manchester Pharmaceuticals has been acquired by Retrophin. As those who have been taking Chenodal know, Manchester has been manufacturing the medication for CTX patients in the US for about the past 2 years. Now that will shift to Retrophin. From their website, Retrophin is a biopharmaceutical company focused on the discovery, acquisition, development and commercialization of drugs for the treatment of debilitating and often life-threatening diseases for which there are currently limited patient options. I have had a few conversations with some of the individuals at Retrophin and have come away from those conversations excited for the future of care, advocacy, education, awareness, treatment, and research for CTX patients. I am eternally grateful for the work and contribution that Manchester and their staff provided as the manufacturers of Chenodal and credit them for having the confidence to hand over the future of CTX to Retrophin. Here is a link to the press release about the acquisition: http://amda-1pla2o.client.shareholder.com/releasedetail.cfm?ReleaseID=825424