Here are the most important results from the survey on the participation of patients affected by rare diseases in research involving 3,213 patients and their families, conducted in 23 languages in 42 countries around the world! After months of analysis, we are delighted to be able to share the results of this research. To help make the results easy to digest and useful for you, we’ve created this infographic, translated into your language. Here you’ll find some facts, such as the top three barriers preventing rare disease research, the top three research priorities for patients, and what matters most to you when you participate in research. We encourage you to use this infographic to spread the word about the importance of rare disease research. Feel free to share the link with your networks via social media. For those who want to know more, you can read the full report here in English. As you can see, your contribution has provided valuable insights into rare disease patient participation in research, and the data will continue to be used by rare disease patient advocates around the world. For example, some national associations used the document’s nationwide findings to support their activities during Rare Disease Day 2018. Look forward to hearing more about the upcoming Rare Barometer Voices survey on access to care, which will be available soon . In the meantime, keep spreading the word about Rare Barometer Voices by sharing this link: https://www.eurordis.org/voices/en
Collagene VI Italia ONLUS participated in the Rare Barometer Voices research!
