We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.
Founded in 2013, the Pediatric Congenital Heart Association quickly filled a niche as the voice of the congenital heart patient. We are both changing the national landscape and empowering patients and families, locally.
What we do:
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. Our programs are designed to reach the patients and parents, themselves, while at the same time address necessary changes to broader patient care systems to promote a culture of engaged patient care.
Give a Voice
PCHA seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. By creating a solid grass-roots foundation, we leverage this voice to successfully inform legislators, administrators, government agencies and other key stakeholders to move forward key policy changes that impact the congenital heart disease community as a whole. We also teach patients and families to advocate for themselves in their own care.
PCHA understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and investigators to promote patient focused research. PCHA promotes patient engagement in research from protocol development and implementation through information dissemination. We also advocate for robust funding mechanisms that address critical gaps in understanding of CHD.
Our state chapter program gives hope to families through direct support and education, meeting families where they are. Through local activities like peer-to-peer support, care package distribution and education materials; we are working directly with patient, families and medical professionals, impacting one life at a time.
“PCHA means that I have someone fighting to make sure I have access to information that I can understand and for legislation that impacts my future health.” – TrinityFull Story>