1. 1
Surveys and polls
#ECRDBerlin

2. 2
Quantitative data needed for rare diseases
•Policy makers: i.e. drug access, must be scientific
publication
•Interventions and treatments to be targeted to
unique manifestations of disease
•To help understand delay in diagnosis,
misdiagnosis
•Doctors #ECRDBerlin

3. 3
Online communities for research
•Enable patient to express themself
•Document collective voice
•Advocacy tool
•Research answers frequently appearing questions
on community
#ECRDBerlin

4. 4
Patient groups driving research
• EURORDIS Care Surveys
#ECRDBerlin

5. 5
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,
summary.
#ECRDBerlin

6. 6
http://bit.ly/BehcetPollResults

7. 7
http://bit.ly/BehcetPoll
• Translated to 6 languages,
including Chinese
• Over 5k page views
• Shared widely on social media,
10k combined impressions
• Next up for Behcet’s groups:
creating international alliance

8. 8
atypical HUS
Poll to help patient groups find out how to serve members. For 50% of
respondents, it was first time participating in research.

9. 9
•Involve and consult medical experts
•Translate and parallel design of poll
•Involve members of your network in
promotion
•Send results to participants
#ECRDBerlin
Key lessons

10. 10
www.facebook.com/rareconnect
team@rareconnect.org@rareconnect
www.youtube.com/user/eurordis
Danke.
Here we are:
www www.rareconnect.org