Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit www.phaware.global. phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bellerophon Therapeutics & CVS Health.

UCSF's CPVD Conference Transcript

Mar 3, 2017

Over the past decade, great strides have been made in the understanding of the pathobiology of pulmonary vascular disease, and from these findings new therapeutic options have emerged. It is increasingly clear that pulmonary vascular pathology is integral to a number of childhood disorders. 

At the 11th International Conference Neonatal & Childhood Pulmonary Vascular Disease, chair's Jeffrey R. Fineman, MD and Ian Adatia, MBChB, FRCP will bring together international experts to explore their current understanding of the basic pathobiology as well as new and future therapies for neonatal, pediatric, and adult pulmonary vascular diseases. Learn more here.

 

Jeff:
My name's Jeff Fineman. I'm originally from New York, where I did most of my medical school training, and then I moved out here to University California San Francisco, where I trained in pediatric critical care medicine. I started my research career at the Cardiovascular Research Institute here. I do ICU for a living, predominantly cardiac ICU. I run the ICU here at UCSF Benioff Children's Hospital. I'm also now a senior investigator at the Cardiovascular Research Institute.

Ian:
My name's Ian Adatia, and I'm professor of pediatrics at the University of Alberta. I'm director of the Pediatric Pulmonary Hypertension Service at the Stollery Children's Hospital in Edmonton, Alberta.

Jeff:
It was kind of the golden years for me, because I was up and going in the lab, kind of independently, and then Ian came. I really saw an expert at the bedside and clinical researcher, a human-based researcher in Ian. I had really been more of a basic science researcher. It was really a great time, and I felt like I couldn't get enough time together to talk about problems, etc. It came up one day that we should really put together a conference focused on neonatal and pediatric cardiovascular disease.

Ian:
It's hard to imagine it's been a decade of organizing the conference with Jeff. It's been a real pleasure, actually, to work with Jeff. It's been a really good partnership. I think Jeff recognized that we didn't have a conference dedicated to the science and clinical care of children, and adolescents, and babies with pulmonary hypertension. He wanted to bring together clinicians and scientists to one venue where they would be free to discuss for two days, and interact for two days, and come up with ideas that might be beneficial.

Jeff:
We started adding a science session for particularly young investigators can come and present their work. That's really taken off. We've added some awards for young investigators, a basic science award and a clinical science award. That's been very nice. 

Ian:
One of the most important milestones was when we started to try to include children and families, get money for them to travel, and have a special family-oriented sessions so that the families could meet the physicians and the scientists, and give their point of view both formally and informally. In that way, I think it's become a really fulfilling conference for the scientists, the clinicians, and the families and the children. 

Jeff:
One of the big focuses of Ian and I over the last few years is really to try to build up a family session, a session where families, and patients, and siblings, things that are really focused on the needs of families from pediatric pulmonary vascular disease, a place for them to come and talk amongst themselves, and also, hopefully we can put together a program that's useful for them. 

Ian:
Going forward, we'd really like to have more funding for families and children to come, and take part in the meeting, and really, really express their opinion, and interact with the scientists and clinicians, because I think that's the way for us to move forward.

Jeff:
It's really a passion of ours. It's not something that is financially feasible, because we don't charge the families, nor should we, but it's something that we think is really important. I really think there's a void, in a place where they can all come in a formal setting and learn from each other. This would be the perfect place to do that. We do it in parallel with the science session. It's the only time when there's two sessions running simultaneously, and we want both of those areas to really build. We have the junior people, the junior investigators and the young pulmonary hypertension experts of the next generation, a place to foster them, and also, a place to support families and their patients.

Ian:
All our decisions are very important for the families, and that we have such a huge responsibility to them, and that when they're present, it makes you think about what's being said at the meeting. For instance, when people talk about mortality, and there's a family there, it changes your perception of that word, and how it's felt, and what it means, and I think inspires people to really work harder, do more, and try to find an answer for pulmonary vascular disease. The stories that the families and children have told have been inspiring. It's something that you don't have time in clinic to listen to, and you don't always realize how articulate and how intelligent the families and the patients are about their disease, and what a lot you can learn from them. Just because of the pressures of everyday clinic life, it's hardly time to get everything done in a day. To come into a meeting like this really helps you to step back and hear what they have to say, listen to their reactions, where they want to go.

Jeff:
Every year, it's gotten more and more popular. We'll keep going, trying to make it an important part of the meeting.

Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitterinstragram, youtube & linkedin #phaware #phawareMD