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Surveys and polls

#ECRDBerlin

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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

Online communities for research

•Enable patient to express themself

•Document collective voice

•Advocacy tool

•Research answers frequently appearing questions on community

#ECRDBerlin

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Patient groups driving research

• EURORDIS Care Surveys

#ECRDBerlin

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

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http://bit.ly/BehcetPollResults

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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

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

aHUS Results

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•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

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www.facebook.com/rareconnect

team@rareconnect.org@rareconnect

www.youtube.com/user/eurordis

Danke.

Here we are:

www www.rareconnect.org