Evidence-Based Policy and Advocacy Academy for Rare and Non-Communicable Disease Patient Advocacy Groups
Evidence-Based Policy and Advocacy Academy for Rare and Non-Communicable Disease Patient Advocacy Groups
Overview
Access to innovative treatments for rare and non-communicable diseases remains a global challenge. Despite promising therapies, patients often face significant delays and inequities in access due to regulatory, financial, and systemic barriers. To help close these gaps, MSH—together with Sanofi—launched the Evidence-Based Policy and Advocacy Academy, a global initiative to build the capacity of patient advocacy groups (PAGs) to actively participate in value-based health decision-making.
The initiative:
- Equips PAGs with tools to interpret and influence Health Technology Assessment (HTA) processes
- Enhances understanding of pricing, reimbursement, and managed entry agreements
- Builds skills in advocacy, policy shaping, and elevating patient-reported outcomes
- Delivers tailored, multilingual training: Currently underway in Türkiye, the Academy continues to grow—advancing health equity and strengthening patient voices in global policy dialogues.
Building Knowledge, Shaping Policy
In 2025, the Academy launched its latest cohort in Türkiye, delivering modules to a new group of patient advocacy leaders. Through a five-session virtual training, PAGs are gaining essential knowledge and tools needed to engage in HTA and policy processes—ensuring that patient experiences shape access to treatments for rare and non-communicable diseases.
Rabia Sucu
Senior Principal Technical Advisor, Health Policy and Financing
Project Contact
Dr. Rabia Sucu, MSH’s senior principal technical advisor for health policy and financing, leads the Health Technology Assessment (HTA) and market access cluster within the health economics and financing (HEF) practice area of GHSI.
Before joining the HEF team, Dr. Sucu served as a principal technical advisor for pharmaceutical policy and governance for USAID’s Safe, Affordable, and Effective Medicines (SAFEMed) for Ukrainians Activity. In this role, she led efforts to institutionalize HTA in Ukraine, in addition to improving policies around priority setting, pharmaceutical pricing, and reimbursement strategies.
Prior to joining MSH, Dr. Sucu was the director of the Health Technology Assessment, Real World Evidence and Innovation Center at Ankara Numune Hospital in Ankara, Turkey, and a professor of family medicine. She served as the national clinical quality coordinator of the Turkish Ministry of Health, where she coordinated all activities in the country involving HTA, clinical guidelines, and quality. She also served on the pharmaceutical reimbursement committee for many years.
Donors
Donors
Sanofi