March 3rd is World Birth Defects Day (WBDD). The PUSH! (People and Organisations United for Spina Bifida and Hydrocephalus) Global Alliance joins forces with over 70 participating organisations in promoting and increasing global awareness of birth defects, in particular neural tube defects (NTDs) and hydrocephalus. The groups are advocating for more prevention, care and research to help improve lives of all affected by these conditions.
NTDs affect about half a million pregnancies every year. The majority of these infants go on to develop Hydrocephalus. In addition to NTDs, birth defects such as Dandy Walker malformation, Chiari malformation, aqueductal stenosis, among others, make congenital Hydrocephalus even more prevalent, with an estimated 375,000 new cases of infant hydrocephalus per year in Sub-Saharan Africa alone. In the United States, hydrocephalus is the leading cause of brain surgery in children.
Nearly ¾ of NTDs could be prevented if all women that could become pregnant followed the widespread recommendation to take a daily supplement containing 400mcg of folic acid both before conception, and for the first 3 months of pregnancy. As NTDs occur in the very early days of pregnancy, preconceptional folic acid is key to prevention. Health education resources on prevention of NTDs in English and Spanish are available on the March of Dimes Foundation website.
To accelerate spina bifida and hydrocephalus prevention, and to realise optimal care and better quality of life for those affected, the PUSH! Global Alliance launched a new website last year and published an initial set of Global Report Cards, covering four of the six regions of the World Health Organization (WHO), to great success. The aim of the cards is to collate and provide country-level information on spina bifida and hydrocephalus prevention and care. The report cards serve as a necessary starting point to discuss what can be done to amplify prevention and care efforts worldwide.
Today, the PUSH! Global Alliance is delighted to announce the launch of the report cards of the WHO regions AMRO (The Americas) and EURO (Europe), thus making data available for all the countries in the world. An article describing the way the Global Report Cards were created, “Scorecard for spina bifida research, prevention, and policy – A development process” has recently been published online in Preventive Medicine.
To further develop its advocacy work, the alliance is launching a new professional portal and connection site through OPENPediatrics, a global community of practice, connecting clinicians with the aim of improving the care of children worldwide. Through this new portal, the alliance aims to develop a global network of clinicians and other health professionals in the fields of both spina bifida and hydrocephalus care to facilitate professional discussion and the sharing of relevant events, resources and materials internationally. A first video contribution is made by Dr. Benjamin Warf, (Hydrocephalus and Spina Bifida Chair at Boston Children's Hospital), with his lecture on “Growing Brains: Searching for the Optimal Treatment of Infant Hydrocephalus”.
The alliance firmly believes that by joining forces we have a stronger united voice and can create a more informed, stable platform for positive change, not only in terms of these conditions, but all birth defects.
About the PUSH! Global Alliance
The PUSH! Global Alliance is a global platform that includes the world’s leading private and public organisations in healthcare, research, academia, and patient advocacy. The mission of the alliance is to unite organisations as the global voice, to accelerate spina bifida and hydrocephalus prevention, and to realize optimal care and a better quality of life for those affected. PUSH! recognizes that there is strength in numbers. Strategic partnerships among these dedicated organisations can help increase visibility, foster sharing of knowledge, experiences, expertise and strategies, and help to mobilize and focus resources to yield stronger, more sustainable country-level efforts for prevention and care.
The International Federation for Spina Bifida and Hydrocephalus was founded by people with Spina Bifida and Hydrocephalus (SBH) and their families in 1979. Over the years, it has grown from a voluntary association into a professional disabled people's organisation (DPO) with global coverage, democratic structure and transparent and accountable processes. IF's fast-growing membership now includes 62 member organisations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered organisations that share IF's vision and mission and actively involve people with SBH in their work. Whilst maintaining a focus on advocacy and care, IF strengthened its commitment to primary prevention, announcing the launch of its Global Prevention Initiative (GPI). As a member of the Food Fortification Initiative IF has made repeated calls for global measures to introduce mandatory fortification of a staple food with folic acid.
About the Global Prevention Initiative
The Global Prevention Initiative (GPI) aims to tackle the primary prevention of neural tube defects (NTDs) and hydrocephalus as a united global community. Its goal is to unite all relevant organisations, NGOs, governments, policy makers, health services, health professionals, researchers, commercial organisations, and individuals around the world in the fight to maximize risk reduction and affect a decrease in the number of pregnancies affected by both Neural Tube Defects (NTDs) and Hydrocephalus. The GPI aims to start reducing global incidence of hydrocephalus by raising public health awareness, and reducing risk factors associated with NTD, premature birth and infection, in addition to promoting further research into the causes of congenital and infectious hydrocephalus.