A summary of the member survey of Rare diseases Sweden, presented on Rare Disease Day, 28 February 2022
Healthcare needs in Sweden, a rich western country with high social welfare standards
Modern Healthcare systems are badly adjusted to the needs of people living with rare diseases. Lack of knowledge about the disease meets lack of collaboration and coordination between highly specialized healthcare professionals.
Besides individual storytelling, data is needed to raise awareness for the complex but highly needed system change. But data is scarce because no registries exist and disease codes for the more than 7 000 rare diseases known today are not being used consequently.
Instead, patient organizations and their member registries are the only source providing access to the target group: people living with rare diseases.
Rare Diseases Sweden performed a digital member survey with over 100 questions in winter 2021 with 1483 participants.
Results show that being diagnosed as adult is common and that the diagnose process can take more than 30 years. Getting diagnosed however improves healthcare encounters according to four in ten participants. Open comments clarify repeatedly that access to diagnose, and expertise is crucial for perceiving good care.
However, three in ten participants have never met an expert for their diagnose and four in ten report that the best knowledge about the rare disease is available at patient organizations.
Although a majority of seven in ten live with a syndrome diagnose with effects on multiple organ systems, only two in ten have an individual care plan and half of the participants would like to have an individual contact person helping them with coordination of care which can take between six and over 21 hours per week.
Healthcare systems need to adjust better to the needs of people living with rare diseases, even in countries with high social welfare standards.
Statistics showing the large challenges are scarce and we strongly suggest more research collaboration to utilize the valuable sources available in patient organizations.
Additional information about the member survey