Resources

Here are some trusted online resources for learning more about Congenital Heart Defects (CHD). These organizations provide detailed information, support resources, and updates on CHD research and treatment.

Luke’s Purpose

• • Luke’s Purpose has built a trusted list of resources, local and national, to help guide you and your family through your grieving and your healing. Listed below are grief counselors, group therapy, sibling loss resources, camps, Facebook groups, and more.
  • Website:lukespurpose.org

Aero Angel

• • AeroAngel is a unique, national non-profit aviation charity that uses only private jets flown by a crew of volunteer, professional pilots to provide air transportation when no other safe options exist.
  • Website: aeroangel.org

Levi’s Legacy

• • Levi’s Legacy serves and supports families facing the daunting reality of CHDs, along with the dedicated medical professionals who stand by their side.
  • Website: levislegacy.org

American Heart Association (AHA)

• • The AHA is a leading resource for heart-related conditions, including CHD. Their website provides information on types of congenital heart defects, treatment options, and tips for living with CHD.
  • Website: heart.org

Centers for Disease Control and Prevention (CDC) – CHD Information

• • The CDC offers a comprehensive overview of CHD, including statistics, types of CHDs, possible causes, and resources for families and healthcare providers.
  • Website: cdc.gov/ncbddd/heartdefects

Children’s Heart Foundation (CHF)

• • CHF is dedicated to funding research and supporting those affected by CHD. Their site includes information on CHD types, research initiatives, and community support resources.
  • Website: childrensheartfoundation.org

Congenital Heart Public Health Consortium (CHPHC)

• • The CHPHC works to increase awareness and improve public health related to CHD. They provide helpful resources for families, medical professionals, and the general public.
  • Website: chphc.org

Mended Little Hearts

• • Mended Little Hearts provides support, education, and community for families affected by CHD. They offer support groups, personal stories, and resources for coping and connecting with others in similar situations.
  • Website: mendedhearts.org/mended-little-hearts

National Heart, Lung, and Blood Institute (NHLBI)

• • Part of the NIH, NHLBI offers in-depth medical information about CHD, covering causes, symptoms, diagnosis, treatment, and ongoing research.
  • Website:nhlbi.nih.gov

Adult Congenital Heart Association (ACHA)

• • ACHA is dedicated to supporting adults with CHD, who often face lifelong health concerns. They provide resources for navigating healthcare, understanding health risks, and staying connected with others in the CHD community.
  • Website: achaheart.org

Pediatric Congenital Heart Association (PCHA)

• • PCHA focuses on education, research, and support for families of children with CHD. They also advocate for CHD awareness and offer helpful guides on navigating CHD care.
  • Website: conqueringchd.org

These resources offer a mix of educational content, community support, and the latest research findings, making them helpful for both newcomers and those looking to deepen their understanding of CHD.