Take Rare Barometer Survey Today
How long does it take to get a diagnosis?
How many specialists do we see before we are diagnosed with HHT?
What difficulties do patients face in diagnosing the disease?
It’s time to get updated answers and find solutions.
Participate in this Rare Barometer survey.
– You can answer in your national language
– You can respond as a patient or as a family member of a patient.
– It will take 20 minutes of your time at most but your answers are really important.
– A recommendation! In one question you will be asked to indicate your condition. Be sure to write HHT (and not Rendu Osler Weber). That’s the only way we’ll have all the data aggregated.
– Invite all your HHT family members to participate – to have a statistically significant result we are looking for 1500 responses from all over Europe. Let’s make our voices heard!
Here is the link to the survey: tiny.cc/survey_diagRD
Thank you for your participation!