A detailed needs assessment on rare diseases across territories will be realized in 2021 worldwide. This will be made in collaboration with Rare Disease Patient Advocacy groups, research institutes, governmental agencies and health care centers.
The goal is to describe the international landscape of rare disease detection and awareness by identifying strengths, gaps and opportunities. The finalized report will be available for free to the public and will be distributed in priority to patients, caregivers, healthcare centers, patient advocacy groups, etc.