Fewer than 10% of adults with CHD are receiving recommended care
There is no cure
15% of babies born with CHD will not see their 18th birthday
25% of children born with CHD need heart surgery or other interventions to survive
#1 cause of birth defect related deaths
There is an estimated 2-3 million people living with CHD
CHD is as common as autism and 25 times more common than Cystic Fibrosis
40,000 infants are born in the US each year with CHD
Nearly 1 in 100 newborns are born with CHD
Congenital Heart Disease is the #1 birth defect

Welcome to PCHA

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are founded on the key purpose to be the resounding voice of the pediatric patient population. PCHA works passionately through collaboration in advocacy, education and research to reduce the impact of congenital heart disease while striving to realize a world free from it.

Volunteers Needed. Learn More.

PCHA Blog

March 2, 2015

Volunteer Opportunities

Be a part of something bigger. The mission of the Pediatric Congenital Heart Association is to Conquer Congenital Heart Disease. We know that we cannot do it alone. PCHA is growing rapidly in size, reach and programming! We are forming Read on! →

March 5, 2015

Finding Hope in Washington D.C.

Tori is mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Read on! →

Educational Resources

Trusted Resources

It can be very difficult navigating the world of congenital heart defects. Knowledge certainly is power. Our goal is to empower patients and families by providing them with educational resources they need to achieve the highest quality care available to them.

The following trusted resources provide information about congenital hear defects. Many of the major congenital heart treatment centers also offer excellent information about CHD.

Facts on Congenital Heart Disease

Congenital heart disease (CHD) is the life-long consequence of a heart defect, or a structural abnormality of the heart present at birth. Heart defects are the most common birth defects, and the leading cause of birth defect related infant death. There are 40,000 babies born with heart defects each year and more than 5% of them will not live to see their first birthday. Thanks to advances in medical research, however; more and more children are surviving. Promising estimates suggest there are currently more than two million people living with heart defects. Yet, those who survive often face multiple surgeries, a lifetime of doctor’s appointments, medications, therapies and other interventions, and still face premature death.

Congenital Heart Disease is #1 birth defect
Nearly 1 in 100 newborns are born with CHD
40,000 infants are born in the US each year with CHD
CHD is as common as autism and 25 times more common than Cystic Fibrosis
There is an estimated 2-3 million people living with CHD
#1 cause of birth defect related deaths
25% of children born with CHD need heart surgery or other interventions to survive
15% of babies born with CHD will not see their 18th birthday
There is no cure
In 2009 direct hospital costs alone for children and adults with CHD was over $2 billion dollars
Those affected with CHD have 3-4 times higher rates of ER visits than the general population
Fewer than 10% of adults with CHD are receiving recommended care

Send us your feedback

The Suggested Questions Guide is a collaborative initiative with patients and providers to move quality, outcomes and transparency forward to help empower patients and improve long-term outcomes. We welcome your feedback as we work to make this an effective tool for both patients and providers!

Click here to send us your feedback!

Patient Education Tool Form

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(Mark all that apply)
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- Parent
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- Friend
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*If Other, where?
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Research

PCHA supports both Federal Research as well as privately funded organizations.

The Importance of Research

There is little understanding of how to prevent heart defects and unfortunately, no cure, either. Thanks to medical advances, children with congenital heart defects are living longer, but there is still much work to be done. Through our organization we strive to disseminate new research findings and the implications they create on the CHD community. It is part of our mission to continually support the research necessary to find the best treatments and work towards a cure for congenital heart disease.

The Importance of Participating in Research

Without research there will be no cure. Although funding is essential to research studies, they also cannot be completed without participation. Children are not just smaller versions of adults. Children are constantly growing changing and developing into adults. This simple fact leads to the very complex issue of why research on the proper treatments and cures for congenital heart disease needs to start with children instead of modifying the treatments that have been tested on adults. Estimates do not lead to cures, actual research and results do.

Research, Resources and Collaboratives

The National Heart Lung and Blood Institute offers an excellent resource about children in research.

Other research programs include:

Federal Research

The Federal Government is the single largest funder of congenital heart defect research. We support Federal Research by advocating for funding and working with individual agencies to ensure that their efforts remain directed at meeting the needs of the patient community. Our federal partners include the National Institutes of Health who are currently looking at why heart defects occur in development, as well as different treatment strategies. We also work with the Centers for Disease Control and Disability. The information provided by population based data collection help us provide a better understanding of congenital heart defects across the lifespan and the resulting public health burden.

Patient Centered Research

There are over 2 million people living with congenital heart defects. However, research studies are often designed by the scientists themselves. PCHA actively promotes the idea that the patient should be at the center of any research study from beginning to end. We represent the patient voice in research collaboratives and individual research projects.

Advocacy

PCHA is the resounding voice of the pediatric congenital heart community. Our voice is strengthened by the involvement of all of those who share our mission. Those who share their stories, and advocate on behalf of the people in their lives affected by congenital heart disease. Each one of us has a story to tell. These stories make a great impact when told the right way to the right people. Let PCHA help you advocate to fellow patients, doctors, researchers and lawmakers. These are the issues that PCHA is currently working on.

Learn More

Legislative Champions

Check out the list of lawmakers that support our cause.

Webinar: 2015 Advocacy Update

Slides from Feb 17th Webinar. Learn more about advocacy and how you can get involved!

Guide for a Successful Meeting

Check out these guidelines for an effective in-person meeting with your lawmaker.

Personalized Leave Behind

Create your own handout that will certainly make an impact!

How to contact your lawmakers

Guide to various ways to connect with your elected officials

Take Action Now

ASK SHEET

Email this document to your legislators informing them how they can take action to support CHD.

Email your legislators

Follow these simple instructions to tell them about needed research funding

Stand Up for Research and Quality

Collecting Petitions is Easy: 1) Print and cut in half. 2) Get friends and family to sign. 3) Mail petitions to PCHA at: 14 Ellis Potter Court, Suite 100, Madison, WI 53711

1 Voice 40,000 Strong

Each year, 40,000 babies are born with a congenital heart defect. Together we can be the voice for this vulnerable population. Working together we can amplify the voice of the CHD community, increasing our impact on lawmakers.

We are asking 40,000 patients, family members, friends, medical professionals and lawmakers to come together to:

Stay informed
Share your story
Make a difference

Click here to be a part of something bigger, today!

1 Voice 40,000 Strong

Name*
PrefixFirstLastSuffix
Address
Street AddressCityStateZIP Code
Phone
Email
Untitled*
(Mark all that apply)
- Patient
- Parent
- Family Member
- Friend
- Medical Provider
- Legislator
Email Opt Out
- I do not wish to receive any email communication from PCHA
Post Mail Opt Out
- I do not wish to receive any postal mail from PCHA

I Did it!

Have you recently taken action as a PCHA advocate? If you’ve taken multiple actions, please enter each one at a time.

Click here to tell us about it!

Stories

Jacob Kilby

I want to introduce you to an amazing young man who will change the way you look at the world. Jacob Kilby is a young, 19 year old local San Diego surfer who is facing a major health challenge. You often hear Read on! →

Noah Bella

Despite enduring four heart surgeries and six cath procedures since birth, our daughter, ten-year-old Noah Bella has never let her Congenital Heart Disease define who she is. Noah has loads of personality: charisma, magnetism, strength, character, and an ever-present mindset to Read on! →

Mirabel Atkinson

Nine-year-old twins, Mirabel and Sofia, share a special bond. Born at 32-weeks, they were more exceptional than most identical twins in that they shared a placenta and an amniotic sac. But one significant difference they have is that Mirabel was Read on! →

Rayna Schuh

In June of 2006 my husband Tim and I found out that our family would be blessed with the gift of baby. As you can imagine we were excited and anxiously awaiting that first Dr.’s appointment to hear our new baby’s heartbeat. Read on! →

Jack Radandt

Jackson was born on Easter Sunday, 2001. We brought our perfect 8lb 6oz baby home from the hospital and enjoyed two days with our new little one. All seemed well; Jack was a wonderful, healthy baby. At least that’s how Read on! →

Kieran Touney

When Kieran was born, I felt like I was giving birth in a theater filled with an expectant audience—a repertoire of doctors stood around, anticipation on their faces, waiting to spring into action. As Kieran had been diagnosed with HLHS Read on! →

About Us

We are founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy to reduce the impact of congenital heart disease while striving to realize a world free from it.

Education: Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources they need to achieve the highest quality care available to them. First, we will hold meetings to connect the medical professional and patient communities to identify quality standards that can be meaningful to patients and families. Then we will work with marketing, community services providers and patients to develop messaging, resources and communication vehicles (print, online, electronic communication) that can reach the diverse patient/family population.

Research: PCHA understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and researchers to promote patient focused research. We promote participation in research collaboratives in many different national, regional and local settings. Advocate for funding of these research efforts is also a key to In addition, PCHA will work with patients and families, communicating advances in research as well as educating them about the importance of engaging in research, themselves.

Advocacy: PCHA seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. Through this voice we seek to inform legislators and the CHD community and create an impact on related policy decisions. Our current priorities include advancing the understanding of CHD through data collection and research, improved treatment options through age appropriate research, and ensuring access to quality care.

Who we are:

David M. Kasnic, Executive Director

David is a founding member of the Pediatric Congenital Heart Association.

David brings over 15 years of executive management and a true passion for high growth businesses. His experience in leading the growth of a small business through a rapid growth period, acquiring several companies and selling the company to a private equity group has given him a wealth of knowledge that few operators experience. He attributes his business success to listening to both internal/external customers, continual innovation, strategizing for growth and hiring key talent.

Outside of work, David enjoys spending time with his family. He is an avid bike rider and lover of the outdoors. He earned a Bachelor of Science degree in Finance/International Business from the University of Tulsa; graduating in 1992.

Amy E. Basken, Director of Programs

Amy is a founding member of the Pediatric Congenital Heart Association.

As the mother of a child with a heart defect, Amy has had the privilege of spending the last nine years leading congenital heart disease advocacy efforts for many of the largest national congenital heart disease organizations, coalitions and consortiums. Her accomplishments include the introduction, passage and funding of the Congenital Heart Futures Act, the development and growth of the Congressional Congenital Heart Caucus, as well as coordinating national messaging for the Critical Congenital Heart Disease Screening movement.
Amy has a Masters of Sciences degree from the University of Wisconsin – Madison, graduating in 1996. She worked for 10 years as a clinical speech pathologist with an expertise in voice and swallowing pathology.

When she’s not working to empower others, Amy is busy managing an active household that includes her husband and three school age children. In any spare time, you will find Amy singing, knitting, or escaping into a good book.

Medical Advisory Board

Brad Marino, MD, MPP, MSCE; Chair

Ann and Robert H. Lurie Children’s Hospital

Dr. Marino is an attending cardiac intensivist at Lurie Children’s Hospital. He is a Professor of Pediatrics and Medical Social Sciences at the Feinberg School of Medicine at Northwestern University, also serving as the Director of the Center for Cardiovascular Innovation in the Stanley Manne Children’s Research Institute. Dr. Marino is the Heart Center Co-Director of Research and Academic Affairs and Director of Cardiovascular Bridge Programs at the Ann and Robert H. Lurie Children’s Hospital of Chicago and Bluhm Cardiovascular Institute at Northwestern Memorial Hospital. Dr. Marino earned his medical degree from Harvard Medical School and a Masters in Public Policy from the John F. Kennedy School of Government at Harvard University. He then completed his pediatric residency at Johns Hopkins Hospital and a combined fellowship in Pediatric Cardiology and Pediatric Critical Care Medicine at The Children’s Hospital of Philadelphia.

Nicolas L. Madsen, MD, MPH

Cincinnati Children’s Hospital

Nicolas L. Madsen, MD, MPH joined the Heart Institute at Cincinnati Children’s Hospital Medical Center in July 2012. He attended the University of California at Davis, where he graduated with honors. He earned his medical degree with honors at the University of Washington in 2005. Dr. Madsen completed his residency in General Pediatrics and his fellowship in Pediatric Cardiology at Seattle Children’s Hospital in Seattle, Washington. In addition, Dr. Madsen earned a Master’s in Public Health from the University of Washington in 2011. Dr. Madsen’s clinical areas of focus include inpatient cardiology and preventive medicine. He is particularly interested in outcomes research and how inpatient management influences the long-term outcomes of children with congenital heart disease (CHD). Consistent with his emphasis on promoting improved outcomes over a child’s lifetime, Dr. Madsen also aims to understand the implications of traditional cardiovascular risk factors such as obesity, hypertension, dyslipidemia, and sedentary lifestyle on children with CHD. Dr. Madsen has received several national awards for his research and is an active member of the American Heart Association and American Academy of Pediatrics.

Jonathan Byrnes, MD

Cincinnati Children’s Hospital

Dr. Byrnes is an assistant professor of pediatrics with the University of Cincinnati College of Medicine and an attending cardiac intensivist in Cincinnati Children’s Hospital Medical Center’s Cardiac Intensive Care Unit. His clinical interests are providing superb, cost-effective care and delivering cohesive management amongst all specialties to facilitate care of the patient and the family in the cardiac intensive care unit. He is active in clinical and translational research involving extracorporeal life support that would benefit critically ill children. This research is primarily focused on the biocompatibility of the patient / device interface and the associated interaction of the coagulation and inflammatory pathways. The aim of these endeavors is to ultimately decrease the incidence of end organ dysfunction and stroke associated with these therapies.

Michelle Gurvitz, MD

Boston Children’s Hospital

Dr. Gurvitz is an assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital. Dr. Gurvitz is board certified in pediatrics, internal medicine and pediatric cardiology and has a Master’s degree in Health Services Research. Currently, Dr. Gurvitz divides her time between research and clinical care. Her research is primarily in areas of health services, long-term outcomes, and quality of care. She is a founding member of the Alliance for Adult Research in Congenital Cardiology and a member of the adult congenital committees of the American Heart Association and the American College of Cardiology. Dr. Gurvitz also maintains an active clinical practice seeing adults with congenital heart disease.

Dunbar Ivy, MD

Children’s Hospital Colorado

Dr. Ivy is a board-certified pediatric cardiologist and serves as the Chief of Pediatric Cardiology at the University of Colorado School of Medicine, Co-Director of the Heart Institute and Director of the Pediatric Pulmonary Hypertension Program at Children’s Hospital Colorado. Dr. Ivy’s clinical specialties include pulmonary hypertension, cardiac intensive care, and congenital heart disease. Dr. Ivy also pursues research interests in new ways to diagnose and treat pulmonary hypertension in children.
Dr. Ivy received his medical degree from Tulane University School of Medicine in New Orleans, Louisiana. Dr. Ivy later completed his internship and residency in pediatrics and fellowship in pediatric cardiology at the University of Colorado Program at Children’s Hospital Colorado.

Jeffrey P. Jacobs, MD

All Children’s Hospital

Dr. Jacobs, M.D., FACS, FACC, FCCP is Director of the Andrews/Daicoff Cardiovascular Program at Johns Hopkins All Children’s Heart Institute and Professor of Cardiac Surgery in the Division of Cardiac Surgery of the Department of Surgery at Johns Hopkins University. He isalso Surgical Director of the Heart Transplantation Program and Director of the Extracorporeal Life Support Program at Johns Hopkins All Children’s Heart Institute. Dr. Jacobs has been a cardiothoracic surgeon at All Children’s Hospital since 1998. Dr. Jacobs Editor-in-Chief of Cardiology in the Young, one of the most widely read journals in the world dedicated paediatric and congenital cardiac care. He also Chairs several Society of Thoracic Surgeons (STS) Task Forces related to the STS Database: He was Chair of the STS Congenital Heart Surgery Database Task Force for 8 years from 2006 through 2014. In 2007, and 2009, he was appointed Chair of the STS Database Task Force on Longitudinal Follow-up and Linked Registries, and STS Database Public Reporting Task Force, respectively. In 2014, he was appointed Chair of the STS Database Access and Publications (A&P) Task Force. He is also Co-chair of the Joint EACTS-STS Congenital Database Committee and Chair of the CHSS Committee on Quality Improvement and Outcomes.

Kathy Jenkins, MD, MPH

Boston Children’s Hospital

Dr. Jenkins serves as Senior Vice President, Chief Safety and Quality Officer at Boston Children’s Hospital. Her activities as a member of the Department of Cardiology faculty are divided between clinical work, research, teaching and mentorship. She maintains an outpatient practice of general pediatric cardiology patients, and attends on the consultation and inpatient services. She directs a clinical research group that conducts studies examining variation in outcomes for patients with congenital heart disease, and evaluation of new therapeutic modalities to treat congenital heart defects. Dr. Jenkins received her undergraduate degree from Colgate University, her medical degree from Harvard Medical School, and her MPH from the Harvard Medical School of Public Health. She completed her clinical training, including a fellowship in Pediatric Cardiology, at Boston Children’s Hospital, where she joined the faculty in 1993, and progressed to Professor in Pediatrics at Harvard Medical School in 2010. She has also attended the Program for Leadership Development at Harvard Business School.

Regina Lantin-Hermoso, MD

Texas Children’s Hospit al

Dr. Lantin-Hermoso serves as Medical Director of Out-Patient Clinics at the Texas Children’s Hospital Heart Center. She is also Pediatric Cardiologist in Advanced Imaging, Fetal Cardiologist and Associate Professor of Pediatrics, Section of Cardiology, at Baylor College of Medicine. Dr. Lantin-Hermoso areas of expertise include fetal cardiology and peri-operative trans-esophageal echocardiography. She has been involved in fetal cardiac monitoring and resuscitation during fetal EXIT procedures and open fetal interventions. One of her research interests is the development of 3Dimensional echo protocols for the evaluation of congenital heart defects, particularly the quantitative assessment of ventricular function in Single ventricles by 3D Echo. She has been involved in the Single Ventricle Program, and along with other Echo lab faculty, is interested in identifying echo prognosticating characteristics that might predict outcomes.

William T. Mahle, MD

Children’s Healthcare of Atlanta

Dr. William T. Mahle is a pediatric cardiologist currently serving as Medical Director, Heart Transplant Program and Medical Director, Clinical Research at Children’s Healthcare of Atlanta and Marcus Professor of Pediatrics at Emory University School of Medicine in Atlanta, Georgia. Dr. Mahle is committed to research in the field of pediatric cardiology and congenital heart disease. His academic interests have focused on perioperative care with a particular interest in neurodevelopmental outcomes. He serves on several national committees including National Heart Lung and Blood Institute (NHLBI), Pediatric Heart Network (PHN), American Heart Association’s Cardiovascular Disease in the Young (CVDY), and United Network Organ Sharing (UNOS).

Gerard R. Martin, MD

Children's National Health System

Dr. Martin is the Senior Vice President of the Center for Heart, Lung and Kidney Disease; and, Medical Director for Global Services. He has been in practice at Children’s National Health System since 1986. Dr. Martin was promoted to Professor of Pediatrics, with tenure, at the George Washington University School of Medicine in 1995 and was the Chief of Cardiology from 1997 to 2009. He was named the C. Richard Beyda Professor of Cardiology in 2007. Dr. Martin was educated at Syracuse University and the State University of New York, Upstate School of Medicine. After a residency at Brown University and the Rhode Island Hospital, he received his training in pediatric cardiology at the Cardiovascular Research Institute at the University of California, San Francisco. He has published over 100 peer reviewed manuscripts, book chapters and invited publications and has presented abstracts at over 90 meetings. Dr. Martin is an invited lecturer who has traveled to over 100 hospitals and universities within the USA as well as around the world. Additionally, Dr. Martin has been a volunteer on medical missions to third world countries. He has served in a consultant role within the United States as well as in South America, Asia and the Middle East.

Matt Oster, MD, MPH

Children’s Health Care of Atlanta

Dr. Oster is a pediatric cardiologist at Sibley Heart Center Cardiology at Children’s Healthcare of Atlanta. He holds Emory appointments of Assistant Professor of Pediatrics in the School of Medicine and Assistant Professor of Epidemiology in the School of Public Health as well as an appointment as a medical officer at the CDC’s National Center on Birth Defects and Developmental Disabilities. He earned his MD at the University of Pennsylvania School of Medicine and his MPH in epidemiology at Emory University Rollins School of Public Health. He completed residency training in pediatrics at the University of California-San Francisco and fellowship training in pediatric cardiology at Emory University. When not seeing patients, he serves as director of the Children’s Cardiac Outcomes Research Program at Sibley Heart Center. His primary research interests include the epidemiology of congenital heart disease and long-term outcomes for patients with congenital heart disease.

Sara K. Pasquali, MD, MHS

C.S. Mott Children’s Hospital

Dr. Pasquali is an Associate Professor in the Division of Pediatric Cardiology at the University of Michigan C.S. Mott Children’s Hospital, and a faculty member at the Center for Healthcare Outcomes & Policy. She Co-Directs the Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program and the Fellow Research Program within the Michigan Congenital Heart Center. Dr. Pasquali’s research, supported by NHLBI, focuses on evaluation of outcomes and quality in children undergoing heart surgery. She has published more than 90 peer-reviewed manuscripts in this area, and is an elected member of the Society for Pediatric Research, and the Congenital Heart Surgeons Society. Dr. Pasquali leads the Health Services and Outcomes Collaboratory within the Pediatric Heart Network, and directs the Pediatric Cardiac Critical Care Consortium Data Coordinating Center. She is a member of the Society of Thoracic Surgeons Congenital Heart Surgery Database Taskforce, Editorial Board of Circulation: Cardiovascular Quality and Outcomes, and the American Heart Association Executive Database Steering Committee.

Julie Slicker, MS, RD, CSP, CD, SNSC

Children’s Hospital of Wisconsin

Ms. Slicker is currently the Quality, Outcomes and Research Manager of the Herma Heart Center at Children’s Hospital of Milwaukee in the Division of Cardiology. Julie has been at Children’s Hospital of Wisconsin since June 2006. Pediatric nutrition for infants with complex congenital heart disease is Julie’s passion, and since 2006 she has dedicated her time to caring for the nutrition of this patient population. In conjunction with patient care, Julie’s research focuses on hypoplastic left heart syndrome (HLHS) and single ventricle physiology. She pursued her Master’s Degree at the Medical College of Wisconsin in Clinical Translational Science and graduated with that degree in 2013. Through this experience, she was able to publish several manuscripts and was invited to speak at several national conferences. She is currently pursuing a degree as a nurse practitioner in order to continue her work in the cardiac ICU, caring for the patients she has come to cherish over her career thus far.

James Tweddell, MD

Children’s Hospital of Wisconsin

Dr. Tweddell is currently Professor of Surgery (Cardiothoracic) and Pediatrics, as well as Chief of the Division of Cardiothoracic Surgery, at the Medical College of Wisconsin in Milwaukee. His research has focused on the care of the neonate before and after complex congenital heart surgery. He and his colleagues at the Children’s Hospital of Wisconsin have strived to develop reliable and reproducible evidence based perioperative management strategies to improve survival and developmental outcomes. Their work has included the use of novel monitoring techniques such as continuous venous oximetry and near infrared spectroscopy and the development of a home monitoring program to limit mortality of these same high-risk infants during the early months of life, now widely adopted across the country. More recently, his team has established a multi-institutional, multi-disciplinary group studying bleeding and antithrombotic strategies among pediatric cardiac surgical patients with a special focus on neonates and patients requiring mechanical circulatory support. This research group includes research and clinical hematologists, anesthesiologists, critical care specialists and heart surgeons. The faculty of the division of cardiothoracic surgery is proud to have an integrated 6-year training program in thoracic surgery and currently we have 6 residents. We anticipate graduating our first resident using this new pathway in June of 2015. We have also recently received ACGME approval for a congenital heart surgery training program.

Contact

14 Ellis Potter Court, Suite 100
Madison, WI 53711
608.370.3739
advocacy@conqueringchd.org

Welcome to PCHA

March 2, 2015

March 5, 2015

Educational Resources

Trusted Resources

Facts on Congenital Heart Disease

Suggested Cardiac Team Questions

Send us your feedback

Patient Education Tool Form

Research

PCHA supports both Federal Research as well as privately funded organizations.

The Importance of Research

The Importance of Participating in Research

Research, Resources and Collaboratives

Federal Research

Patient Centered Research

Advocacy

Learn More

Legislative Champions

Webinar: 2015 Advocacy Update

Guide for a Successful Meeting

Personalized Leave Behind

How to contact your lawmakers

Take Action Now

ASK SHEET

Email your legislators

Stand Up for Research and Quality

1 Voice 40,000 Strong

1 Voice 40,000 Strong

I Did it!

I Did it!

Stories

Jacob Kilby

Noah Bella

Mirabel Atkinson

Rayna Schuh

Jack Radandt

Kieran Touney

Share Your Story

About Us

Who we are:

David M. Kasnic, Executive Director

Amy E. Basken, Director of Programs

Medical Advisory Board

Brad Marino, MD, MPP, MSCE; Chair

Nicolas L. Madsen, MD, MPH

Jonathan Byrnes, MD

Michelle Gurvitz, MD

Dunbar Ivy, MD

Jeffrey P. Jacobs, MD

Kathy Jenkins, MD, MPH

Regina Lantin-Hermoso, MD

William T. Mahle, MD

Gerard R. Martin, MD

Matt Oster, MD, MPH

Sara K. Pasquali, MD, MHS

Julie Slicker, MS, RD, CSP, CD, SNSC

James Tweddell, MD

Contact