Management Sciences for Health to Run Advocacy Academy to Promote Greater Patient Participation in Rare Disease Decision Making

Arlington, VA—February 8, 2022—Management Sciences for Health today announced it has been awarded a contract to develop and run a virtual advocacy academy to train more than two dozen patient association groups involved in combating rare diseases, which affect some 300 million people globally. 

The project, funded by Sanofi, aims to boost patient knowledge, and participation in decisions made by government agencies that may restrict access to lifesaving treatments for rare but potentially deadly conditions. 

Technologies and therapies for rare disease can be out of reach for many patients, often because of high costs or restrictions by payers. Training patient groups on concepts used by governments, including Health Technology Assessment and evidence-based medicine, can help patients better understand their role in this important process.

The virtual advocacy academy will include training sessions, workshops on lessons learned, success stories, and progress reports. The materials will be developed in English and French and involve local, regional, and national groups representing a diverse set of rare diseases.