Patient Advocacy Organizations

What We Do

As advocates to eliminate maternal mortality and severe morbidity, the coalition’s overarching goal is to provide a home and platform for the patient voice to actively engage in efforts to make childbirth safer in the United States. The coalition provides training and tools to prepare “champions for change.”   

We look at cross-cutting issues such as quality and consistency of healthcare delivery, patient-provider communications, racial disparities, inadequate research funding, and other leading contributors to adverse outcomes in pregnancy and the postpartum period.

Who We Are

MoMMA’s Voices is a national coalition of patient organizations and individuals with “lived experiences” – or those that represent them – using their voice to reduce maternal complications in pregnancy and the postpartum period.

We invite all those who experienced, or whose loved one experienced, any of the leading causes of death, near misses and severe morbidity such as preeclampsia, postpartum hemorrhage, amniotic fluid embolism, placenta accreta, cardiovascular disease, mental health and other medical complications of pregnancy​.

 

Executive Council  |  Members  |  Supporters

How to Join

 

If you are a leader of a patient advocacy organization and would like to join the MoMMA's Voices Coalition, please visit our membership section to read more about benefits, policies and to apply.

 
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Executive Council

The Preeclampsia Foundation reduces maternal and infant illness and death due to preeclampsiaHELLP syndrome, and other hypertensive disorders of pregnancy by providing patient support and education, raising public awareness, catalyzing research and improving healthcare practices.  We envision a world where preeclampsia no longer threatens the lives of mothers and babies.

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Executive Council

Our mission is to spur research, raise public awareness and provide support for those whose lives have been touched by the often-fatal maternal health complication known as amniotic fluid embolism (AFE).

Executive Council

Our Mission: Eliminating preventable maternal mortality and severe maternal morbidity attributable to placenta accreta.

Our Focus: Increasing awareness of accreta and cesarean overuse, advocating for moms and babies, and connecting patients & providers with resources to help improve quality of care.

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Executive Council

2020 Mom is Closing Gaps
We understand the health care system and deliver the Maternal Mental Health message and solutions to stakeholders and thought leaders to drive policy change. We engage advocates to drive change in their communities and states.

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Executive Council

We envision a world where all women have the opportunity to enter motherhood and not only survive, but thrive. 

We work to achieve quality, respectful, and equitable maternity care for all by giving grants and working with partners and thought leaders to increase awareness and mobilize communities to take action.

EVERY MOTHER COUNTS’ MISSION IS TO MAKE PREGNANCY AND CHILDBIRTH SAFE FOR EVERY MOTHER, EVERYWHERE.

Executive Council

The Shades of Blue Project is dedicated to breaking cultural barriers in maternal mental health by raising awareness and ensuring action is being taken to break the stigma surrounding seeking treatment in the minority community when experiencing complications after childbirth.  We respect every woman and their birth story no matter the outcome, we all have a story and no one experience is the same. Our goal is to support the women we serve who seek help before pregnancy with education readiness, and during pregnancy so that they are aware of potential issues in the postpartum period and after child-birth with maternal mental health advocacy, treatment and support. 

Executive Council

To lead the effort to solve the most pressing health issues that affect Black women and girls in the U.S. Through investments in evidence-based strategies, we deliver bold new programs and advocate health-promoting policies.

Executive Council

As a maternal near-miss survivor, Marianne Drexler brings her personal experience of surviving a massive hemorrhage after the birth of her second child which resulted in an emergency postpartum hysterectomy. Marianne is dedicated to sharing the patient and family experience of unexpected outcomes of childbirth, the postpartum period and beyond. In 2016, she launched the online support group, Maternal Near-Miss Survivors and currently serves as a patient-family advisory council member at the hospital where she gave birth.

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Executive Council

Erica M. McAfee is the Founder of Sisters in Loss, a digital media platform dedicated to helping millennial black women replace silence with storytelling around pregnancy and infant loss and infertility. 

 

Its self-titled podcast is the first and only podcast that spotlights resilient black mothers who share intimate details of their journey to motherhood through loss and infertility stories.  Sisters in Loss has been featured in Black Enterprise Magazine, Women’s Health Magazine, and Refinery 29 as a resource to heal, gain clarity and peace, and find hope after loss.  Launched in August 2017 the podcast has amassed a community of 20,000+ Sisters in Loss worldwide

 

Erica is a Birth and Bereavement Doula, Grief Specialist, Mom to two angels in heaven and one rainbow baby Maxwell also known as Super Mighty Max.  She is an alumnus of Virginia Commonwealth University (VCU) with a B.S. in Chemical Engineering.

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Member Organization

Sepsis Alliance is the leading sepsis organization in the U.S. working in all 50 states to save lives and reduce suffering from sepsis. Sepsis Alliance is a charitable organization run by a dedicated team who share a strong commitment to battling sepsis.

 
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Member Organization

HER mission is to find a cause and cure through research, to provide clinical resources and support for those seeking effective management strategies, and to advocate for improved access to medical care globally.

  

The HER Foundation is the world's largest network of HG survivors and the leading website for HG information. HER is dedicated to helping those suffering with HG and those who have survived it. In 2003, HER was created as a global voice of hope and understanding for women with HG. Our mission is to find a cure through research, to provide education and support for those seeking effective management strategies, and to provide information to family and friends who may not understand what their loved one is enduring.

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Member Organization

PCOS is one of the most critical, under-diagnosed, underfunded and neglected areas of health. There is a huge health disparity when it comes to PCOS diagnosis and support. 50% of women and girls with PCOS are going undiagnosed or misdiagnosed. Additionally, it often takes women several years and up to seven doctors before they can find someone who can help them with the condition. Despite affecting millions of lives and families and the serious health consequences, PCOS awareness and support organizations, receive less than 0.1% of the government, corporate, foundation, and community funding that other major health conditions receive. The lack of funding extends into PCOS research, stifling advancements. Our vision is that PCOS is treated as a public health priority.

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Member Organization

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated specifically to bringing national awareness to Antiphospholipid Syndrome (APS), the major cause of multiple miscarriages, thrombosis, and young strokes and heart attacks. We are a volunteer-run, community-based, non-profit organization.

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Member Organization

THE SHANE FOUNDATION was established to raise awareness and support research for the prevention and treatment of contraceptive-and pregnancy-related blood clotting disorders.

Maternal/fetal clotting disorders are responsible for miscarriages, low birth weight, stillbirths and maternal deaths.

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Member Organization

Our mission is to advocate, educate, further research & aid in the prevention of Peripartum Cardiomyopathy; a form of heart failure solely brought on by pregnancy. We promise to provide emotional and financial support to women and their families that have been deeply affected as a result of this deadly and often over looked condition. All donations will go to increasing awareness, education and research. But most importantly help the families that are financially crippled after receiving this heart failure diagnosis during and/or after pregnancy. Most women cannot return to work after a PPCM diagnosis. It can take anywhere from three months to a year, if ever.

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Member Organization

The PPROM Foundation aims to provide resources and support for those who have experienced Preterm Premature Rupture of Membranes (PPROM) in their pregnancy and beyond. We promote awareness of PPROM through: Advocacy in Expectant Management, conducted by PPROM parents through support groups and individual consultations. Partnerships with healthcare providers, hospitals, and organizations who support maternal, fetal / neonatal health, research, and person-centered care in Expectant Management. The pProm Registry of individuals diagnosed with PPROM in pregnancy. Through the collection of self-reported data by volunteers who have endured a pProm diagnosis in pregnancy, we will survey trends in expectant management, outcomes, and long term effects in survivors. A database of information about this syndrome will be critical in bringing new therapies to the market through research and advocacy

Member Organization

To reduce the number of sepsis-caused deaths through:

  • Raising public awareness of sepsis through education and awareness programs to promote faster diagnosis and effective treatment for children and young adults

  • Improving medical diagnosis of sepsis, particularly pediatric sepsis, through the implementation of rapid treatment protocols and improved communication between parents and medical staff in hospitals and medical clinics

  • Supporting those affected by sepsis and providing a platform for their voices to be heard.

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Member Organization

The mission for the LetsTalkPPCM Non-Profit Organization is to eradicate Peri Partum Cardiomyopathy as a life-threatening heart disease found in pregnancy by advancing research, education, screening, treatment, events and films.

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Member Organization

Our mission is to prevent any harm, stillbirth or infant death caused by alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition.

SUPPORTERS

 
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To join MoMMA's Voices, please see the membership page for levels of participation and more information.

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MoMMA's Voices is a program of the Preeclampsia Foundation.

Preeclampsia Foundation is a 501(c)(3) non-profit organization, Tax ID# 91-2073087.


©2019 Preeclampsia Foundation. All rights reserved.