Hello. I just want to find out how everyone is doing? I'm doing ok. Go to the doctor on Friday. PFT's then also. I think if we can get some doctors together to talk about this disease it would be great, but how do we get them together when we are all over the world and the US?

I have been wondering this very thing. I know my pulmonary docs consult with doctors at other institutions and I've had them call the docs at John's Hopkins Myositis clinic to talk to the autoimmune lung team, but it would be nice if there was a list of all our docs AND a list of our case profiles so they might be able to pool ideas. I think I'll send an email to my docs and ask them if such a list exists, or what forum to use to go about setting up such a database. What does your doc say about this?

I would be very keen to join you in this. I am sure the consultants I see in the UK would be interested in this. I am currently on holiday in the USA and my pharmacist has given me 60mg tabs of Nifedipine instead of 20mg and they are modified release so I can't even split them. Tommorrow I am going to find out how much we take for granted the NHS. However the American pharmacist was pretty horrified it had happened in the first place. Not as much as I was though. Kat x

I'm thinking we need an international Antisynthetase Registry for both patients and the doctors who are treating them. Are there organizations out there already that might be a good template for this mission?

In the US there is an organization for rare diseases (NORD). I get e-mail from them occasionally, but when I asked specifically about our syndrome, I don't remember getting a response. I will try again, and add the comment that we would love to get a registry started for patients and doctors. I will keep you all posted on this.

There is a family I know who's 17 month old child just recently came down with neuroblastoma cancer that is all over her body. It is rare. They are fighting hard and I read their blog daily for updates. They said at the beginning that there is a team of doctors all over the world that read each child's case and determine the best approach along with following their progress. They are even able to view CT scans and all test results. So there is a system in place for some diseases already. I have no clue what system or program oversees it though since it is a global effort.