BIND — Birth Anomalies Network of India

Birth Anomalies and Services in India

Birth anomalies (birth defects, congenital disorders) are many different medical conditions, where children are born with disabilities and medical complications, caused by factors that are present since before birth. Many of these conditions can be treated, or appropriately managed. Children can lead a disability-free life. Hospital visits can be reduced, and complications that may frequently be fatal, can be averted. The need to address birth anomalies in India is urgent. Among 22 million births in India, 4.4 to 6.6 lakh babies are likely to be born with these disorders in the country.

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 differences. 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. A strong national initiative is mapping the rehabilitation scenario in India, including the demand for assistive devices.

The non-governmental (NGO) sector, including parent groups have been key stakeholders, providing care and hand-holding caregivers. Several NGOs are the mainstay of treatment, rehabilitation, and psychosocial support. CSR funding has often shouldered the financial support for treatment.

Why BIND?

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 differences 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 differences in India.

Objectives

1. 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.
2. Identify shared objectives and goals of stakeholders: To identify shared goals and objectives, and specific needs.
3. Evidence and Knowledge Generation: To promote research collaborations, with a focus on generation of evidence to guide and support a sustainable, equitable and contextual birth defects service.
4. Influence Policy and Engagement: To use data to advocate for services, and for policies, programmes, and financing mechanisms related to birth anomalies.

Who Can be the Members?

• NGOs and civil society organizations
• Hospitals and medical institutions
• Academic bodies
• Research groups
• Government-affiliated entities
• Individual experts, researchers and practitioners
• Support Groups/ associations for various birth anomalies

Membership is open to organizations or individuals aligned with BIND's objective and working in related fields.

Roles and Responsibilities of Members

• Participate in network meetings, conferences, webinars, and shared learning activities.
• Contribute expertise, experience, or knowledge relevant to birth anomaly systems strengthening.
• Share good practices, data, case studies, innovations, and research.
• Support joint engagement activities.
• Members may contribute to confidential documents or research projects. It is the responsibility of every member to preserve the confidentiality of such materials and not disclose any information externally without explicit permission.

Member Benefits

• Members participate voluntarily and independently.
• Access to shared knowledge, training, and resources.
• Platform for presenting research and knowledge.
• Visibility, networking, and recognition.
• Participation in policy engagement efforts.

Membership Enrolment and Withdrawal

• Organizations and individuals can join by simply emailing their profile and credentials.
• No compensation for attending any meeting or contributing time will be provided unless previously decided and mutually agreed upon.
• Members may withdraw at any time by written notice.
• Membership may also be revoked for any unethical conduct or actions inconsistent with BIND's values and principles.