Declarations

* Commitment to Prevention of Birth Defects by all healthcare systems

The Hague, The Netherlands 1996 (and reaffirmed in Genoa, Italy in 1997.)

We, the members of the Alliance, representing diverse scienti fic organizations and parent/patient interest groups, based throughout the world, dedicated to the amelioration, treatment, and prevention of birth defects, aver that:

Therefore health care systems of all countries - industrialized and developing - must make a commitment to the prevention of birth defects.

This commitment should incorporate, at a minimum, the following: dedication of a part of the health care budget to this purpose and an establishment of monitoring systems of birth defects to track the problem.
Countries whose economic status permits more, involvement should
engage in research leading to prevention of the causes of birth defects
provide access to up to date scientific information
establish public awareness of the problem, and
assure an availability of genetic counselors for those in need of such services.
All that is required is dedication and commitment. We must act now.

* Partnership between developing and industrialized countries

Cape Town, South Africa, Nov. 1997

Cape Town declaration

“In order to meet the needs of the developing world with respect to birth defects, we recommend that partnership between developing and industrialized countries be encouraged; the important role and involvement of support groups be recognized and information be disseminated to the public at large, groups at risk and to health care professionals. In planning the implementation of these recommendations, resources need to be mobilized in order to generate the capacity of the developing countries to play an active role in this process.”

* Empowerment of women

Amritsar, India, Dec. 1998

The Amritsar declaration

“As a consequence of their role in society in many developing countries the impact of the birth of a child with a birth defect falls particularly heavy on women. The lack of appropriate services and support makes them especially vulnerable and endangers their reproductive health. There is an urgent need for resources to be invested that will give access to information, services and support to empower women, free them from stigmatization and discrimination and enable them to make free choices on reproductive options and help them to live healthily. A well resourced network of genetic centers will facilitate these goals.”

* “On Birth Defects and Disabilities in the Developing World”,

Beijing, China, 2005

In September 2000, at the dawn of the third millennium, the 191 United Nations Member States unanimously adopted the United Nations Millennium Declaration, which established targets for reductions in poverty, protection of the environment, and improvements in health and education. Members pledged to meet eight Millennium Development Goals, prepared as a roadmap for implementing this Declaration, by 2015.

One of the Millennium Development Goals calls for a two-thirds reduction in the 1990 mortality rate among children under age five by 2015, with infant mortality as one indicator of progress toward this target. Neonatal deaths are accounting for an ever increasing proportion of infant deaths: among 10.8 million children who die every year, almost 4 million – more than one-third – are less than 1 month of age. The most common cause of neonatal death is birth defects.

In recent decades in countries where infant mortality due to infectious diseases has been reduced through vaccination and improved medical treatment, mortality due to birth defects and genetic and congenital conditions has accounted for an increasing proportion of infant mortality: 30-50% of perinatal deaths and 20-30% of infant mortality.

To realize the Millennium Development Goal of reducing child mortality in the next decade, it is crucial that countries in the developing world take decisive steps to reduce mortality due to birth defects and genetic diseases. Increasing folic acid intake among women of childbearing age through daily supplementation with 400?g of folic acid or through fortification will reduce the occurrence of neural tube defects. Universal iodization of salt will reduce mental retardation due to iodine deficiency. Finally, implementing rubella vaccination programs for young women will prevent congenital rubella syndrome and its associated birth defects, miscarriage, mental retardation and death. Until governments focus on preventing birth defects, infant mortality will continue to be unacceptably high, and reduction in child mortality will be hindered.

The participants at this conference call upon government leaders, health care providers, and NGOs in the developing world to take the following actions:

1. Identify centers of expertise within their regions and establish networks to share information.
2. Conduct a needs assessment and identify needs and interventions that are feasible and appropriate in their countries.
3. Develop country prevention plan based on needs assessment to be presented at next conference.

We must educate the public about birth defects and genetic diseases. We strongly support the Chinese Government’s proposal: Designating September 12th as “World Birth Defect Prevention Day”. We must continue to collaborate to establish and maintain birth defects surveillance and monitoring systems, foster research on the causes and prevention of birth defects and genetic diseases, and establish sustainable, technologically appropriate interventions for the prevention and care of these conditions, including the provision of genetic services.

No matter our own personal interests, or the concerns of the countries we represent, we are all working form the same goal: A future where all babies are born healthy and where every child born with a birth defect receives appropriate care, and can grow up to live a productive and healthy life.

All countries in the developing world should unite for a future of Healthy Children throughout the world!

“Much to be done on Prevention of Genetic and Congenital Diseases”

Rio de Janeiro, Brazil, 2007.

We, the participants of the Rio Conference, representing a wide range of scientific agencies, clinicians, parent and patient groups and governmental and non-governmental organizations, based throughout the world and dedicated to the care and prevention of birth defects and disability, declare that:

An estimated 8 million (7 percent) of infants are born annually with a birth defect. Approximately 3.3 million of these children die from their condition and many of those who survive are disabled for life.

Birth defects are a global problem. The highest rates are in low-income countries where more than 94% of the births of children affected by serious birth defects and 95% of the deaths of these children occur.

The March of Dimes estimates that cost-effective interventions can prevent birth defects or ameliorate their consequences by as much as 70 %. Such care and prevention require comprehensive women’s, maternal, newborn and child health programs. Provision of basic medical genetic services will ensure that people with birth defects or at risk of having children with birth defects can live as normally as possible.

Implementation of programs requires a partnership between lower- and high-income countries in support of:

* active engagement and support of parent, patient and other advocacy groups to enable their full participation in all stages of the process of planning and delivering of health services;
* ensuring participation of stakeholders from all regions of the world and all relevant disciplines;
* strengthening surveillance and other means of collecting data on the toll of disease and disability, gaps in needed services in target populations and the cost-effectiveness of interventions;
* implementing interventions for care and prevention in lower-income populations;
* promoting a comprehensive research and research training agenda to understand causes of birth defects and generate possibilities for more effective interventions;
* establishing effective knowledge management and communication systems; and
* promoting national and international networks. Such networks must include scientists, clinicians, parent and patient organizations, governments, national and international health policy makers and non-governmental organizations in support of the shared goal of reducing the toll of birth defects worldwide.

Since the 2nd International Conference in Beijing in 2005, significant progress has been made in a number of areas. These include a growing number of countries fortifying foods with folic acid, establishing rubella immunization, expanding national and international surveillance networks and strengthening programs for the care of children with various congenital disorders.

The participants in this conference welcome this progress, while recognizing that there remains much to be done, including strengthening specific programs to address other significant causes of birth defects and disability such a preterm birth.

We call upon the international community of scientists, clinicians, parent and patient organizations, governments, health policy makers and donor organizations to work together to develop sustainable programs that ensure a future where all babies can have as healthy a start in life as possible.