2020 Rare Disease Frontline Provider Survey Key Takeaways
There are over 7,000 rare diseases in existence with over 25 million patients affected. Yet, healthcare access and quality of life are elusive to many rare disease patients, and only 5% of rare disease patients have an approved treatment option. Even when compared to adults with common chronic diseases, adults in Minnesota with rare diseases had significantly worse stigma, physical function, fatigue, and depression, as well as marginally worse anxiety. The Frontline Provider Survey was conducted to gain a healthcare professional’s perspective on challenges to addressing the needs of the rare disease community.