OK, lets go for it.
The first thing we have to do is identify and define our objectives. We need to be very clear about what we are going to set out to achieve from the beginning. So if anybody would like to add suggestions we can make a start on that.
Guess we should give ourselves a group name
We need a core team to set up and drive this forward
Agree on the legal structure, e.g. Set up a non-profit
At some point we will need a lawyer. Preferably one with COPD who will do the work for free
Then set up our finances
Start fund raising
Build awareness

These are just my initial thoughts, I'm still on my first coffee of the day. Will come back later, hopefully to lots more ideas.