Programs and conferences around the world
2010-present. European Union and the Government of Netherlands – Preparingforlife
This initiative, funded by the government of The Netherlands, seeks to develop a core preconception health agenda for consideration by international policy makers, researchers, nongovernmental organizations (NGOs) and donor organizations.
2009-present. The International Awareness Project: Monitoring Risk Factors and Policies
The Centers for Disease Control and Prevention (CDC) funded initiative will provide information, by country and region, on risk factors that can be modified during the preconception period to reduce mortality and morbidity from birth defects, stillbirth, preterm birth, low birth weight and other adverse pregnancy outcomes. Partners include the CDC, International Clearing House for Birth Defects Surveillance and Research (ICBDSR), University of Utah, the Latin American Collaborative Study of Birth Defects (ECLAMC), World Health Organization (WHO) and March of Dimes.
2008-present. March of Dimes Global Network for Maternal and Infant Health (GNMIH)
The March of Dimes has long recognized a need for better communication and coordination among the many organizations working to improve the health of women, mothers and babies worldwide. In response, the Foundation in 2008 took the bold step of creating and funding the GNMIH, a global network of interlinked mission alliances whose goal is to reduce mortality and disability from birth defects and preterm birth in developing countries. The core philosophy of GNMIH is one of communication and collaboration among all developing country expert members, from the early stages of proposal development through the conduct and evaluation of Network projects and publication of research findings. This approach is essential because it is only through strategically managed networks like GNMIH--where the locus of power and decision making resides as it should with developing country partners--that their development and core capacities can be truly developed and sustained. Four initial Network partners were chosen for their geographic balance, history of demonstrated success in improving birth outcomes and capacity to expand their programs both nationally and regionally. The four initial partners are located in Porto Alegre, Brazil; Beirut, Lebanon; Manila, Philippines; and Beijing, People's Republic of China.
2008-present. The WHO Global Burden of Disease Study (GBD): The Burden of Birth Defects
This project is generating updated mortality and disability estimates for the GBD Secretariat on selected common birth defects, including congenital heart defects, neural tube defects, oral-facial clefts, Down syndrome, and a category of other major congenital conditions.
2008-present. Capacity Building for the Transfer of Genetic Knowledge into Practice and Prevention (CAPABILITY)
CAPABILITY is a networking project funded by the European Commission. It links the European Network of Excellence for test development, harmonization, validation and standardization of genetic services with leading developing country experts who are working to integrate medical genetic services, including pre- and post-marital preconception health testing and counseling, into primary care and prevention.
2004-present. The International Preterm Birth Collaborative (PREBIC)
PREBIC aims to improve pregnancy and birth outcomes through supporting international networks investigating the causes and prevention of preterm birth and low birth weight, evaluating risk factors and biomarkers and developing intervention strategies across the continuum of care for prevention and management of at-risk pregnancies.
2001-present. MOD-WHO EURO-PAHO-UNICEF-ARC Alliance for Eradication of Congenital Rubella Syndrome (CRS)
Through support for the rubella vaccination campaign, March of Dimes, jointly with UNICEF and the European Regional Office of the World Health Organization (WHO-EURO), is helping initiate eradication of CRS in countries of Central Asia and Eastern Europe. It is doing the same with the Pan American Health Organization (PAHO) in Latin America.
1998-present. World Alliance of Organizations for the Prevention and Treatment of Genetic and Congenital Conditions (WAO)
In 1998, March of Dimes co-founded the World Alliance of Organizations for the Prevention of Birth Defects. The Alliance is an organization dedicated to the prevention and amelioration of birth defects by the application of existing knowledge, promotion of research leading to new knowledge, and professional education directed primarily to health care providers. Through the leadership and partial financial support of the March of Dimes, the Alliance has continued to meet and has developed a website. Global Programs’ active support of the World Alliance helps increase awareness of the global toll of birth defects.
The International Conferences on the Prevention of Birth Defects and Disabilities in the Developing World.
Birth defects, preterm birth and small for date births have received relatively little attention to date by international health policy makers. Yet the global toll of death and disability from both is high. Every year, an estimated 21 million children are born with a serious birth defect or born preterm (13 and 8 million, respectively). More than 4.5 million children die from birth defects or prematurity in their first five years of life and, for those who survive, a majority suffers a lifelong disability. The toll of mortality and disability from these conditions is particularly harsh in Africa and Asia where over 90 percent of affected births and 95 percent of deaths of children with these disabilities occur. Recognizing the growing need to build capacity in lower-resource countries for the prevention of birth defects and preterm birth and care of those affected, the primary goal of these conferences (see below for list) has been to provide specific practical tools and approaches that developing country participants can use to implement and strengthen services when they return to their respective countries. Participants include health care providers, experts in data collection and monitoring, researchers, parent-patient organizations and youth volunteers from both the developing and industrialized world.
2011: Fifth International Conference (Lodz, Poland)
2009: Fourth International Conference (New Delhi, India)
2007: Third International Conference (Rio de Janeiro, Brazil)
2005: Second International Conference (Beijing, China)
2001: First International Conference (Johannesburg, South Africa)
In May 2006, the WHO and March of Dimes convened 18 experts from industrialized and developing nations to ratify the data and findings of the 2006 March of Dimes Global Report on Birth Defects (see below); agree upon the definition of birth defects and congenital disorders; develop a collaborative five-year plan to strengthen services for the care and prevention of birth defects and hemoglobin disorders in developing countries; and determine how various stakeholders, including parent/patient organizations and other lay support groups, national governmental agencies, foundations and other NGOs, the private sector, media, and donor organizations, can contribute to these efforts. A report of this meeting was published in January 2007 and is available through the Department of Human Genetics at WHO.
2002-2005. Partnership for Genetics Education of Health Care Professionals in South Africa
In the spring of 2002, Global Programs began a three-year project in South Africa to develop a Medical Genetics Education Program for registered nursing staff. Nurses play an important role in primary health care delivery in South Africa and they are key providers in rural areas. Global Programs partnered in this endeavor with the South African Inherited Disorder Association (SAIDA) which has overseen development of a birth defects curriculum as part of the Perinatal Education Programme Series. The curriculum is currently being taught in several provinces in South Africa. In 2005, the collaboration also produced a CD-ROM version of the March of Dimes Genetics & Your Practice educational curriculum for use in South Africa.
The Americas programs
2007-present. Inter American Development Bank – CDC – PAHO - Institute of Nutrition of Central America and Panama (INCAP) - Ministry of Health of Costa Rica – March of Dimes – Project Healthy Children partnership for Fortification of Foods with Folic Acid and other Micronutrients in Central America
Central American countries are currently fortifying foods with folic acid and other micronutrients at varying levels and lacking adequate quality control. With primary funding from the Inter-American Development Bank, this project aims to establish recommendations for uniform norms and standards for food fortification across Central America; including the countries of Guatemala, El Salvador, Honduras, Nicaragua, Belize and Panama. Representatives from the partner organizations form the technical group overseeing implementation of this program. Uniform standards and quality control will be established for wheat and corn flours, sugar, and salt. Micronutrients include folic acid, B-complex vitamins, vitamin A, iron, iodine and zinc.
2006-2008. March of Dimes - Pan American Health Organization Program to Reduce Maternal Infections
The March of Dimes partnership with the PAHO and its technical office, the Latin American Centre for Perinatology, Women, Maternal and Reproductive Health (CLAP/WMR), aims to reduce the incidence of infections that are transmitted from a mother to her fetus or neonate (vertically) throughout Latin America. March of Dimes supported and provided technical assistance for the development of a curriculum for health promoters and other primary care providers in the region. The curriculum provides training in the diagnosis and treatment of vertically transmitted infections, as well as tools that providers can use to educate their patients about infection prevention. The training curriculum is available in three languages (Spanish, Portuguese and English) and is being disseminated in both print and in a web-based format.
1999-2005. de Waal Foundation Partnership for Prenatal Health Education in Latin America
In 1999, March of Dimes created a partnership with the Netherlands-based de Waal Foundation to develop and deliver a prenatal health education program in Latin America. Training is targeted to health and education professionals and to community leaders. March of Dimes assisted the de Waal Foundation by providing prenatal health education materials and technical support. The program was initiated in Ecuador in 2000 and then expanded to Honduras, El Salvador, Panama, Venezuela, Peru, Bolivia and Argentina. Within each country, a program office coordinates prenatal health education through a network of participating local NGOs.
1999-2001. Alliance to Research and Promote Folic Acid Fortification in the Americas
Seizing a unique opportunity in the country of Chile in 1999, the March of Dimes, in partnership with the National Nutrition Institute in Chile (INTA), CDC, PAHO and the University of Florida, helped support a research project that determined the effectiveness of food fortification with folic acid in increasing blood folate levels in women of childbearing age and in reducing the incidence of neural tube defects. Folate status was assessed in a cohort of approximately 700 women of reproductive age living in the capital city of Santiago. The women agreed to allow measurement of their blood and serum folate levels at two points in time. The first measurement was conducted in the fall of 1999, just before national fortification began in January 2000. Their blood folate levels were measured again in 2001, approximately one year after implementation of fortification. Study data demonstrated a significant increase in blood folate levels following fortification and a 40% subsequent decrease in incidence of neural tube defects. These findings have served to spur fortification efforts throughout the Americas.
The Americas conferences
2003. March of Dimes-PAHO Regional Conference on Folic Acid Fortification (Santiago, Chile)
In October 2003, PAHO, in collaboration with the March of Dimes and CDC, cosponsored a regional conference in Santiago, Chile, to promote standards for fortification of flour with folic acid and other micronutrients in the countries of the Americas. The goal of the conference, which was attended by representatives from 20 countries of the region, was to strengthen national fortification programs. The conference, summarized in a 2004 PAHO monograph, highlighted the experience of the successful national folic acid fortification campaign instituted by Chile in January 2000 and drew on recommendations of the January Technical Consultation. Since the conference, a number of countries have activated national micronutrient committees to analyze the feasibility of the recommended changes.
2003. March of Dimes-PAHO Technical Conference on Folic Acid Fortification (Washington, DC)
In January 2003, PAHO, in co-sponsorship with the March of Dimes Global Programs and CDC, convened a technical consultation in Washington, DC, entitled Recommended Levels of Folic Acid and Vitamin B12 Fortification in the Americas. The topic of the consultation has been the subject of considerable international debate and disagreement. This meeting was a milestone in that participants, for the first time in any public forum on this issue, achieved consensus on what the recommended national fortification levels of folic acid and vitamin B12 should be. The findings are specific to the Americas, but have been used to influence fortification policy in other regions. The conference proceedings were published in June 2004 in the journal, Nutrition Reviews.
Eastern Mediterranean programs
2006-2008. Program with the American University of Beirut to Improve Preconception, Prenatal and Neonatal Health in Lebanon and Other Countries of the Middle East
The National Collaborative Perinatal Neonatal Network (NCPNN) of Lebanon is a multidisciplinary partnership of specialists in public health, pediatrics, obstetrics, genetics, family medicine and nursing. The network's goal is to improve preconception, prenatal and neonatal health through the collection of perinatal health data and the use of these data to strengthen professional and public education, program evaluation and the setting of health priorities by government. This projected, among other tasks, expanded the NCPNN surveillance system to rural/semi-rural hospitals in underserved areas of Lebanon; developed a standard questionnaire for use by all NCPNN member institutions; trained local health care personnel in standardized methods of data collection; and began the process of identifying and recruiting other countries in the Middle-East that are interested in joining the network.
2007-2008. March of Dimes - Hôpital Charles Nicole Partnership to Adapt "Genetics in Your Practice"™ for Use in North Africa
Continuing medical education (CME) for clinicians working in the field of medical genetics in Tunisia and North Africa has only recently become compulsory and currently is monitored by the Department of Genetics of the Medical School of Tunis and by the Hereditary Disorders Department of the Hôpital Charles Nicole. However, CME programs remain rare and insufficient in the region. March of Dimes has created a curriculum on medical genetics for physicians, nurses and other health professionals called "Genetics in Your Practice"™ (G&YP). The curriculum, produced on CD-ROM, is directed to medical care providers in the United States; however, with careful adaptation to local needs and resources and translation into the French language, G&YP offers an important means for CME of clinicians practicing in Tunisia and North Africa. This one-year partnership with the Hôpital Charles Nicole in Tunis produced a French-language version of G&YP suitable for training in Tunisia and North Africa.
2006-2007. March of Dimes – Sultanate of Oman – World Alliance Partnership
The goal of this partnership was to develop a five-year plan to strengthen care and prevention of birth defects in the Sultanate of Oman. The one-year consultation with the Omani Ministry of Health culminated in the First National Workshop for Prevention and Management of Birth Defects and Genetic Disorders in Oman that was held in January 2007 in Muscat.
2007-present. March of Dimes – Dartmouth Medical School Alliance to Strengthen Local Capacity for Perinatal Health Surveillance in Kosovo
Many countries within the Southeastern European region suffer from a paucity of research and information on perinatal health. The goal of this mission alliance is to improve the quality of maternal and newborn care in Kosovo by strengthening local capacity in hospital-based perinatal health surveillance. . With over 90 percent of deliveries occurring in hospitals, robust hospital-based surveillance can be a cost-effective and efficient means of assessing pregnancy outcomes. Access to these data will facilitate the identification of needed improvements in clinical care and health education of medical providers and women. As a first step, a pilot study of late stillbirths and early neonatal deaths is being carried out. The study will result in recommendations aimed at improving the quality of maternal and neonatal care. Implementing partners are the Kosovo-based Foundation for Healthy Mothers and Babies and the University Clinical Center of Kosovo.
2005-2006. Building Capacity in Perinatal Health in Central Asia, a Partnership with the American International Health Alliance
In 2005-2006, March of Dimes partnered with the American International Health Alliance (AIHA) to develop a perinatal health training program for primary care providers in Turkmenistan. In January 2006, physicians, nurses and other primary health care providers from urban clinics in Ashgabat, the capital of Turkmenistan, participated in a week-long workshop to improve their skills in the diagnosis and treatment of high-risk pregnancies and sick newborns. This training was followed by two additional workshops held in March 2006 for primary health care providers from across the country. Two clinics in Ashgabat continued to provide the training on an on-going basis. In July 2006, the curriculum was disseminated to other AIHA partner clinics throughout Central Asia. For more information, view the curriculum in or .
2004-2006. Improving Prenatal Health in Eastern Europe, a Partnership with Magee Womancare International
In 2004-2006, March of Dimes partnered with Magee Womancare International to develop and implement prenatal health training programs in Russia, Belarus, Ukraine and Kazakhstan. Clinicians working in the field of women's health attended a prenatal health workshop in Moscow in March 2005. They then returned to their respective countries to implement prenatal health education programs for their patients and communities. In December 2005, Magee Womancare International replicated the workshop in Petropavlovsk, Russia. Following this workshop, March of Dimes collaborated with Magee Womancare International to create a preconception and prenatal health education program for community leaders in the Russian Far East. A workshop for community leaders was held in May 2006. Participants subsequently implemented several community-based projects to improve preconception and prenatal health in the region.
2002-2003. March of Dimes - AIHA Program for Improving Perinatal Health in Russia and Ukraine
In early 2002, Global Programs established a partnership with the American International Health Alliance (AIHA) to decrease the rate of preventable birth defects and improve perinatal health in Central and Eastern Europe. During 2002-2003, March of Dimes perinatal health materials were translated into Russian and Ukrainian and disseminated to health professionals in AIHA's extensive network of partner clinics throughout Russia, Ukraine, Moldova and Belarus. In November 2003, AIHA and March of Dimes held a joint international conference in Ukraine on topics of interest in perinatal health in the region. Participants identified a set of action steps to improve prevention and treatment of maternal infections that can lead to birth defects and strengthen medical genetics services.
2001-2008. MOD-EGF Alliance for Genetics Education of European and Western Mediterranean Health Care Professionals
In 2001, Global Programs developed a partnership with the European Genetics Foundation (EGF) to provide support for an annual course to train genetic counselors at the European School of Genetic Medicine in Bologna, Italy. Global Programs involvement in the course is helping improve our understanding of how genetics is taught in medical practice in other countries and increasing March of Dimes visibility within the European genetics community. It is also supporting efforts of the European Union to create a Euro-Mediterranean network whose purpose is to train health professionals from the Eastern Mediterranean region and to share scientific expertise and resources aimed at improving health care in the areas of genetic medicine and cancer prevention.
2010. 1st European Congress on Preconception Care and Preconception Health (Brussels, Belgium)
The conference, held in October 2010, convened health professionals and policymakers from across Europe on the topic of preconception health. Participants explored the potential of preconception health care to reduce risk factors for adverse pregnancy outcomes and discussed barriers to implementation. March of Dimes provided support and technical assistance to the conference. For more information, visit the Preconception 2010 website.
2008. 1st Central and Eastern European Summit on Preconception Health and Prevention of Birth Defects (Budapest, Hungary)
The conference, held in August 2008, brought together clinicians and researchers from across Central and Eastern Europe (CEE), as well as participants from Western Europe and the United States. The conference provided a platform for review, analysis and discussion of the promotion of women’s health before, during and after pregnancy and the role of preconception health and health care in the prevention of birth defects in the CEE region. Participants identified strategies and specific action steps for improving preconception health and for strengthening birth defects surveillance, research and prevention. Recommendations will be shared with stakeholders, including ministries of health, within the CEE region. For more information, visit the conference website.
Southeast Asia programs
2004-present. Program with the Jawaharlal Nehru Medical College, Belgaum, to Improve Maternal and Infant Health in India
The March of Dimes is partnering with the Jawaharlal Nehru Medical College (JNMC) of the KLES Prabhakar Kore Hospital and Medical Research Centre in Belgaum to reduce maternal and infant mortality in Karnataka State, India. In 2004, JNMC physicians developed perinatal health training curricula for primary care physicians and auxiliary nurse midwives. Training began at a primary health center pilot site in early 2005. In 2006 through 2007, the training program was expanded to encompass additional primary health centers in Belgaum District. As of 2008, the program includes new projects to improve adolescent health in rural areas and improve prenatal and newborn health in the peri-urban areas of Belgaum. The curricula and projects that comprise this program are intended to serve as models for similar programs elsewhere in India.
Western Pacific programs
2006. March of Dimes – Peking University Alliance to Establish a National Birth Defects Registry in the People’s Republic of China
Birth defects have become a major concern in China. Approximately 800,000-1,200,000 babies are born each year with a birth defect, representing 4-6 percent of total births. While there is a significant variation in the birth prevalence of birth defects across China, the extent and magnitude of these differences in rates are unclear due to the lack of a centralized, systematic means of data collection and analysis. This two-year project established a birth defects registry in China that allows for a better understanding of these variations and their causes. Because the majority of births take place in China’s national network of Maternal and Child Health Hospitals, the surveillance system is hospital-based. Sixty hospitals in 10 provinces and municipalities (Beijing, Shanghai, Zhejiang, Hunan, Jiangsu, Guangdong, Shanxi, Anhui, Hubei, and Liaoning) have been enrolled in the registry network. The long-term objective of the project is to share the experience of developing the registry system in China with other developing countries and, through this, to contribute to a worldwide network of national registries collecting data on all aspects of the care and prevention of birth defects.
2007. March of Dimes – One H.E.A.R.T. Birth Defects Prevention Project
in the Tibet Autonomous Region (TAR). The toll of birth defects in the TAR is undocumented. As a result, public health awareness about birth defects is low in the population and the availability of medical care services for care and prevention limited. This two-year project––headed by One H.E.A.R.T., in collaboration with the University of Utah, Department of Human Genetics; National Registry of Birth Defects of China (NRBDC); Lhasa Prefecture Health Bureau and Lhasa Prefecture Women's Federation––established a birth defects surveillance and monitoring system in Lhasa Prefecture. A second goal of the project was to also develop curricula on care and prevention of birth defects for medical care providers and the public through the establishment of a local advisory council of key stakeholders from academia, government, NGOs and the public.
Western Pacific programs
2002. Maternal and Child Health Genetics in China in the 21st Century – an International Conference
In partnership with the China Preventive Medicine Association and Ministry of Health, the CDC, the Health Resources Services Administration (HRSA), Astoria-Pacific International and Golden Bridge, Inc., Global Programs conducted a three-day conference and workshop in Beijing in October 2002. The conference brought together international experts in genetics and health and health officials from three provinces and three major metropolitan areas in China and the national government. The Conference built on studies and policy recommendations summarized in the World Health Organization report, Screening for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries. The conference provided an opportunity for participants to develop a framework and associated action steps for implementing genetic services and education programs to prevent and treat birth defects and other genetic diseases in China.