For those who know me, you know I especially have a soft spot for our PH kids. At our first Philly gala in 2013, we showed a video of my kids (so young!) as they talked about the stress of probable transplant and my bad times, but also their hope. We laughed and cried with them. They are in a good place now - because I am in a good place.
Still my heart hurts thinking about how kids with PH are at a disadvantage from adults. There are no FDA-approved drugs and limited studies for kids.
This PHA Registry (PHAR), is the key to helping answer research questions with real world patient data. It will help advance care and quality of life for people living with PH. I think it is especially beneficial for our PH kids, so physicians can track and compare how children are doing on various treatments and then collaborate in identifying trends and best practices based on patient outcomes. PHAR is the key to accelerating research in the United States.
Thank you as always for your incredibly generous support!
Love and hope,