Most of what gets put here will already have been put on Facebook so if you haven’t yet joined our group there, do so now.
The status of most drug developments including clinical trials is captured on the FARA US site and you should start here.
The Children’s Hospital of Philadelphia (CHOP) has made available USB bracelets so you can store the FA Management Guidelines and have them always with you. You can also save other useful stuff on it like names and contact details of emergency contacts, specialists & therapists familiar with you and your condition etc. If you’d like one of these bracelets just fill in this form, sign & send it to me (either via email: firstname.lastname@example.org or smailmail (send me an email and I’ll confirm my home address)), and I’ll send it to you by return.