Patient and Survivor Support Groups

As maternal-fetal medicine specialists, we understand that sharing stories and information about your condition can be therapeutic. We offer this list of support organizations that may be helpful to you and your family.

 

Allo Hope Foundation

Allo Hope supports women with alloimmunization and families dealing with hemolytic disease of the fetus and newborn (HDFN). This organization provides educational materials for both patients and providers about this complex disease and promotes research related to alloimmunization and HDFN.

Amniotic Fluid Embolism Foundation

The AFE Foundation is committed to providing support to those affected by amniotic fluid embolism. To that end, the AFE Foundation has compiled resources and helpful links for families and survivors.  

Birth Injury Center

The Birth Injury Center is a free resource center for families who have been affected by birth injuries as well as those who are expecting and want to learn more about lowering their risk before their child is born.

Ending a Wanted Pregnancy 

An online support group for people who have ended a pregnancy for medical reasons.

Fetal Health Foundation

The Fetal Health Foundation is a nonprofit organization dedicated to hope for expectant parents who’ve received a fetal syndrome diagnosis.

Hope for Two . . Pregnant with Cancer

Hope for Two...The Pregnant with Cancer Network offers free support for women diagnosed with cancer while pregnant. The organization connects women who are currently pregnant with cancer with other women who have experienced a similar cancer diagnosis.

Tiny Hero

Tiny Hero is a group that offers support to families of children born with congenital diaphragmatic hernias (CDH).

Maternal Alloimmunization Support

Maternal Alloimmunization Support’s mission is to provide advocacy and support to those affected by maternal alloimmunization and its comorbid condition, hemolytic disease of the fetus and newborn. They aim to prevent stillbirth and neonatal mortality and mobidity caused by HDFN, and provide patient support through education.

MoMMA’s Voices

(Maternal Mortality and Morbidity Advocates)

A national coalition of patient organizations and individuals with lived experiences or those who represent them, using their voice to reduce maternal complications in pregnancy and the postpartum period. Photos courtesy of MoMMA’s Voices

National Accreta Foundation

The mission of the National Accreta Foundation is to eliminate preventable maternal mortality and severe maternal morbidity attributable to placenta accreta. The focus of NAF is to increase awareness of accreta and cesarean overuse, advocate for moms and babies, and connect patients and providers with online resources to help improve quality of care.

Preeclampsia Foundation

The Preeclampsia Foundation is a US-based patient advocacy organization that provides education and support for those impacted by preeclampsia and other hypertensive disorders of pregnancy. Educational materials vetted by a medical board of experts are available in print, DVD, and online. A dynamic forum (message board) provides 24/7 information and support to visitors across the globe.

Save the Mommies

Save the Mommies' mission is to advocate, educate, further research and aid in the prevention of peripartum cardiomyopathy, a form of heart failure solely brought on by pregnancy.  Awareness is key and saving mommies is their mission.

The PPROM Foundation

The PPROM Foundation aims to provide resource and support for those who have experienced Preterm Premature Rupture of Membranes (PPROM) in their pregnancy and beyond.

Twin to Twin Transfusion Syndrome Foundation

The Twin to Twin Transfusion Syndrome Foundation is dedicated to providing immediate and lifesaving educational, emotional and financial support to families, medical professionals, and other caregivers before, during, and after a diagnosis of twin to twin transfusion syndrome.