We support organizations such as the PCHA, which focus on advocacy, education and support for families affected by congenital heart disease.
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” They are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.
Letter from their Executive Director David Kasnic
In August of 2018, the Pediatric Congenital Heart Association celebrated our 5th Anniversary. I can’t believe it’s only been 5 years since we realized there was a gap in advocacy for pediatric congenital heart disease and decided to take action. This action has helped many in the congenital heart community find a place they previously did not have to share their voice and passion for those living with the most common birth defect. My daily interaction with families, patients and providers continues to fuel my desire to make an impact in the world of our children and friends living with congenital heart disease.
Even though we started in the advocacy space and continue to lead that area, we have since developed into other programs such as education, supporting research and peer to peer support. Here are some highlights from 2018:
- · Education
- Translated our most popular resource into Spanish, making our Guided Questions Tool available to even more families
- Doubling the number of hospitals committed to our multi-centered quality improvement project, evaluating how patients and families interact with their care team
- Led national efforts in improving quality and patient access of outcome information including PCHA’s 5th Summit on Transparency and Public Reporting
- Developing groundbreaking patient navigation tool for providing patient directed access to hospital outcome data
- Committed to reaching a more diverse community in each program area
- Added to the number and depth of the resources for adolescents and adults with CHD while encouraging patients of all ages to stay in care
- Supporting Research
- Led the effort to the passage of the Congenital Heart Futures Reauthorization Act which allocated $50 million to the Center of Disease Control over 5 years for Congenital Heart Disease research
- Collaborating with more than 50% of pediatric cardiology programs across the country
- Peer to Peer Support
- Educating and empowering more than 6000 patients and families through our local programs
- Distribution of essential resources and care packages, leveraging 9000+ volunteer hours through our 14 state chapters
- Building a knowledgeable and compassionate community through social media, reaching 250,000 people a week
We pride ourselves in recognizing gaps in the Congenital Heart Disease space and seeing if we can help solve those issues. Even though we are a small team, we accomplish a lot throughout the year, and we could not accomplish any of this on our own, which is why we rely on the growing grassroot base of volunteers and donors who tirelessly support our mission and programs. At PCHA we always emphasize – this is not about our individual child or friend, it’s about ALL of us that are banding together to Conquer Congenital Heart Disease.
We will continue to give first in all that we do because that’s who we are and what we believe. Whether it is through the gift of money or the gift of time – the generosity of others directly translates to our ability to Give Knowledge, Give a Voice, and Give Hope.
Together, we are Conquering CHD,