Quantitative data needed for rare diseases
•Policy makers: i.e. drug access, must be scientific
•Interventions and treatments to be targeted to
unique manifestations of disease
•To help understand delay in diagnosis,
Online communities for research
•Enable patient to express themself
•Document collective voice
•Research answers frequently appearing questions
Patient groups driving research
• EURORDIS Care Surveys
Experience of people living with Behcet’s
• Moderators and patient group partners contributed
questions, edits of draft poll, and ideas for outcomes we
were looking to highlight.
• Final 18 questions checked by Behcet’s specialist.
• Poll open for 6 weeks on SurveyMonkey, English only.
• Results: 194 responses, 18 countries, infographic,
• Translated to 6 languages,
• Over 5k page views
• Shared widely on social media,
10k combined impressions
• Next up for Behcet’s groups:
creating international alliance
Poll to help patient groups find out how to serve members. For 50% of
respondents, it was first time participating in research.
•Involve and consult medical experts
•Translate and parallel design of poll
•Involve members of your network in
•Send results to participants
Here we are: