Vijayawada: The Directorate of Medical Education (DME), Government of Andhra Pradesh, has issued an announcement inviting stakeholders to participate in a meeting to discuss the draft Rare Disease Policy and related initiatives aimed at strengthening rare disease care across the state. The meeting is scheduled for June 24, 2026, from 9:00 AM to 4:00 PM at Dr. NTR University of Health Sciences (NTRUHS), Vijayawada.
The consultation seeks participation from a broad range of stakeholders, including representatives from government institutions, medical colleges, referral centers, non-governmental organizations (NGOs), patient groups, and subject-matter experts. The objective is to gather insights and recommendations that will help shape a comprehensive and inclusive policy framework for rare diseases in Andhra Pradesh.
According to the announcement, discussions will focus on several key rare disease initiatives. These include the development of a Rare Disease Registry, the implementation of Universal Neonatal Screening, the establishment of Centers of Excellence, and the strengthening of referral networks to improve diagnosis, treatment, and patient support.
Key Agenda Highlights
- Presentation of the draft Rare Disease Policy framework
- Discussion on the operationalization of the Rare Disease Registry
- Examination of the role of referral centers and Centers of Excellence
- Strategies for NGO and patient group engagement
- Exploration of funding models and partnerships
The DME emphasized that stakeholder participation and expert input will play a crucial role in refining the policy and ensuring that it addresses the needs of individuals and families affected by rare diseases throughout Andhra Pradesh.
Organizations interested in attending are requested to provide details of their organization and their contribution to the field. For further information or confirmation of participation, stakeholders may contact the organizers via email at dmegoap@gmail.com.
