Monday, April 5, 2010

Fitting the pieces...

About 18 months ago, PHA was funded by the Medtronic Foundation to develop a program we had conceived long ago...and have recently grown to make practical.  The Defined Populations Project will let us reach out and create programming in five new areas: newly diagnosed patients, young adults with PH, PH patients with associated illnesses, parents of children with PH and caregivers. Surveys and focus groups have led to advisory groups and now new programming for each of these groups.

Recently, I had the opportunity to begin to explore how we can work with PH pediatricians to integrate into and support the family aspects of these growing segments of the PH community.

Following several calls between leaders of PHA's Scientific Leadership Council and the recently organized PPHnet group of pediatricians, I was invited to meet with them in Banff in the Canadadian Rockies.  They had gathered there for the 3rd International Neonatal & Childhood Pulmonary Vascular Disease Conference and for their own planning session.  The meeting organizers picked a beautiful site. Banff is truly one of the world's special places.

While there are strong connections between the PH pediatricians from this group and PHA - Drs. Ivy and Berman Rosenzweig sit on PHA's SLC and Dr. Barst who is on their advisory group is a past SLC Chair -I appreciated the opportunity to present background on PHA for those who are not as familiar with us.

The conversations were produictive and are continuing.  We look forward to developing this relationship in ways most productive for our patients and the entire PH community.

No comments:

Post a Comment