Diagnosing and treating rare diseases is complex and challenging, given the vast number and variations of the more than 7,000 known rare diseases. As the first step in addressing the situation, the Global Genes Corporate Alliance, of which SmithSolve is an active member, fielded a survey to identify knowledge gaps and attitudes of both healthcare professionals and the patient community about rare disease diagnosis. SmithSolve was tasked with communicating the survey results to raise awareness of the current challenges in rare disease diagnosis and provide a blueprint for future education
SmithSolve conducted outreach to target medical trade reporters to leverage the survey results. Through media materials, SmithSolve illustrated key survey findings and shared them in coordination with Rare Disease Day to quantify the need for physician education. The insights gained from the survey are intended to help guide the development of future referral programs, protocols and physician tools.
- Developed materials to communicate and visualize the survey results, including a news release and infographic
- Conducted targeted media outreach to medical trades to highlight survey findings and the work underway to find a viable solution to faster and more accurate diagnosis of rare diseases