Webinar: Results of the Rare Barometer Diagnosis Survey – how to use them in your advocacy work and actions!
January 2025
Accurate and timely diagnosis is critical to end the diagnostic odyssey experienced by people living with rare diseases and ensure their access to appropriate health and social care. Early diagnosis can allow for sooner provision of supportive and holistic care, thereby potentially delaying or reducing the apparition of symptoms, impairments and co-morbidities.
The landmark Rare Barometer survey on the diagnostic odyssey of people living with a rare disease shows that the average diagnosis time is close to 5 years in Europe. This study is the largest conducted to date to measure diagnostic delays for rare diseases and their main determinants, encompassing responses from over 13,300 people from 104 countries worldwide, living with more than 1,900 rare diseases.
In this webinar, the Rare Barometer team will showcase how their publications (article, factsheets and dashboards) have been and could be used to support the advocacy actions of the rare disease community. They will also address any questions you may have about maxmising the impact of these resources in your work.
💬 Webinar: Results of the Rare Barometer Diagnosis Survey – how to use them in your advocacy work and actions!
➡️ Register now!
🗓️ 30 January 2025
⏰ 14:30 to 16:30 CET
Concept Note