Rare Barometer Project

New Rare Barometer Project on Diagnosis

The Rare Barometer Team are offering the opportunity to be involved in a new project on diagnosis. The project aims to identify personal and external factors influencing the process of obtaining a diagnosis for rare disease patients. They want to raise awareness on this topic to bring about change for the rare disease community.
They want you to share your experience in obtaining a diagnosis as a rare disease patient or carer, and your views on how to improve the journey of rare disease patients to diagnosis by participating in an innovative and live online community taking place the 20 – 24 September.
What’s involved?
• 15-20 minutes of activity each day for five days on the online platform
• Answering questions and missions that are assigned to you by a moderator. These can be answer by posting a text answer but also using multimedia content
(Please be aware that the online platform will be facilitated by an independent research institute from OpinionWay Healthcare)
Interested in Participating?
– Complete the pre-registration form
– Deadline: 12th September
You will be contacted by OpinionWay Healthcare with more information
Alex - The Leukodystrophy Charity