Research & Team | Birth Defects Centre, Pune

Why do we need a collective for addressing birth anomalies in India ?

Presentation of our research on birth defects and discussion with Dr Ayesha de Costa, Scientist, Maternal, Newborn, Child and Adolescent Health Department, World Health Organization HQ, Geneva

Birth anomalies (birth defects and congenital disorders) affect 4 to 7 lakh babies in India every year.
Several services are available for children with birth anomalies in India.
The child screening and early intervention service of the Rashtriya Bal Swasthya Karyakram (RBSK) has over 11 000 mobile health teams conducting child screening at schools and pre-schools across the country. There are more than 350 District Early Intervention Centres for diagnosis and early intervention for children with selected birth defects.
A wealth of specialized clinical expertise exists in the private medical sector.
Medical professionals have established organizations for treatment and management of specific congenital disorders.
Several NGOs are the mainstay of treatment, rehabilitation, and psychosocial support. CSR funding has often shouldered the financial support for treatment.

                      Despite these contributions, activities remain fragmented and in individual silos. The overall response is fragmented. A collective voice of all stakeholders is needed 
                      to articulate the needs of children and their families, the required response, and identify strategies that are equitable, sustainable and support ongoing initiatives.
                    

What is BIND ?

An alliance and collective voice of all stakeholders -- affected children and adults, parents, caregivers, families and siblings, clinicians, rehabilitation therapists, nursing professionals, researchers, professional organizations, non-governmental organizations and individuals involved in the field of birth anomalies

Vision

BIND will work towards an India where preventable birth defects are reduced, children and families receive timely, equitable, and quality care, and persons living with congenital conditions are included and supported across the life course.

Mission

To build and sustain a national network that strengthens collaboration, evidence generation, and collective action on birth defects in India.

Objectives

Networking and Collaboration: To build a collective of NGOs, researchers, clinicians, professional organizations, rehabilitation therapists, parent groups, persons with lived experience, and advocates from across India.
Identify shared objectives and goals of stakeholders.
Evidence and Knowledge Generation: To promote research collaborations, with a focus on generating evidence to guide and support a sustainable, equitable and contextual birth defects service.
Influence Policy and Advocacy: To use data to advocate for services, and for policies, programmes, and financing mechanisms related to birth anomalies.

Key Activities

Development of knowledge products.
Engagement with media and via social media to increase visibility.
Strategic engagement with policy makers.
Annual national meeting aligned with the Birth Defects Awareness Month.

Inviting organizations, researchers, clinicians and professional organizations working in the field of congenital disorders, maternal and child health, to join the network. Join the network --- please write to us birthdefcent@gmail.com