“To help CDH families find the best care, a supportive community, and a hope-filled future.” Our favorite feature of their website is “What to Ask Your Doctor?” (which can be found under “Resources”). They also have grants available to eligible applicants under “Let Us Help”

“The Fore Hadley Foundation provides hope, opportunity, and support to the Congenital Diaphragmatic Hernia (CDH) community, and serves to inspire others to join the fight to eliminate this birth defect.” They support CDH Research, award Scholarships to CDH survivors, and have financial grants available for new CDH families, linked below.

‘Families shouldn't have to choose between saving their child's life and financial stability. Our goal is to provide financial assistance for families having to relocate cities in order to provide the best care.” The only CDH charity that provides $500 in grants per family, per month, for at least 4 months upon acceptance.

“Our mission is to raise awareness while financially assisting and connecting with Congenital Diaphragmatic Hernia families in memory of Arianna Lugo.” Their grants assist CDH families to pay for travel, medical, lodging, or other expenses that may occur.

“We are dedicated to spread Congenital Diaphragmatic Hernia Awareness while helping to support CDH patients and their families.” They provide owlet smart socks which offers peace of mind for CDH families during the transition from hospital to home.

“The CDH Foundation will connect every CDH family with resources tailored to your needs. We will follow you, celebrate with you, mourn with you and everything in between.” Under “Events” you can also find information to join support groups, and they have financial grants available for ALL stages of CDH.

Fill out their INTAKE form to learn about the many ways they provide support after discharge. Under “Events” you can also find information to join support groups, and they have financial grants available for ALL stages of CDH — those facing loss, re-hospitalization after discharge, as well as newly-diagnosed families.

“Everything you need to know about babies starting solids, including baby feeding schedules, cup drinking, safety, sodium, baby-led weaning and more.” Created by a team of speech/feeding therapists, nutritionists and pediatricians.

“Helping kids find joy in food and peace at family mealtimes. Our team of professional therapists and medical experts have developed evidence-based feeding, tube-weaning, and family mealtime coaching strategies designed to meet every child’s specific needs.”

“We will dive into the basics of tube weaning to help unravel the conflicting information families get from doctors, therapists, friends, and family. We will share practical tips and provide real world expert advice so that parents can help their little ones start their journey from feeding tube to family table.”

“We provide support for parents of infant loss through self-care therapies, leading to emotional support.” Their Soothing Hearts Program creates an opportunity for parents of infant loss to gain emotional stability through self-care.

Offering bereavement grants help with financial burden after loss.

Offering bereavement grants to help with financial burden afer loss.

“OAW provides ongoing support and grief recovery services for families with a medically-fragile child or who lose a child at birth.” Support services include photoshoots and/or Grief Recovery sessions (linked below) at no cost.

Offering bereavement grants to help with financial burden after loss.

“A global non-profit working to help over 6500 patient families in 74 countries through support services, raising awareness and funding and conducting CDH research.” Their boots-on-the-ground efforts are raising awareness and changing the outcomes for CDH across the globe.

This is an ongoing CDH research study available to all CDH patients and families.

Please take 30 SECONDS and sign the petition to establish a standard of care for CDH patients.