The following physician is an expert in this condition. She was recently in Washington DC at a patient / physician conference for our condition. I saw her speak. I know she is very involved. If you haven't gone on NTMinfo website, (physician referral) it is a good place to view your options. Penn Lung Center is listed as well.
LEAH LANDE, MD – PULMONARY

Lankenau Medical Center
100 Lancaster Avenue, MOB West, Suite 230
Wynnewood, PA 19096
Tel 610-642-3796