Care for the rare
A Mindset Survey ( SAVE THE DATE: 6th October 2022, 18:00 - ETH Zürich Zentrum, Rämistrasse 101, Room HG E 5 – Hörs, 244 Plätze)
What's your age?
< 21 years old
21-30 years old
30-35 years old
> 35 years old
What is your employment?
Do you suffer from a rare disease?
Do you know anyone who suffers from a rare disease? If yes, is there an approved treatment available for them?
Yes, there is a treatment
Yes, but there is no treatment available
Yes, but I don't know if there is an approved treatment
In the EU and Switzerland, how rare is rare? If it affects...
1/1000 - 0.1% of population
1/2000 - 0.05% of population
1/10000 - 0.01% of population
Less than 0.01% of population
How long does it take to diagnose a rare disease?
More than 10 years
For what percentage of rare diseases is there still no diagnosis, treatment or standard care?
When deciding how to allocate funding, what is more important - severity of disease (life threatening but only few people affected) or prevalence amongst the population (affects many people but not life threatening)?
Severity of Disease
Prevalence of Disease
If the prevalence of a disease is minor in Switzerland, but common in other parts of the world - Do we have a responsability for providing medical care to them? - I.e. treatment exists, but access to treatment is limited in certain areas (e.g. HIV, malaria)
Yes, by funding research
Yes, by subsidizing costs for treatment
No, it is not the responsibility of Switzerland
Would you accept higher health insurance fees in order to improve the medical care of rare disease patients?
No, you should only have to pay insurance premiums for issues regarding yourself
No, but the government should subsidize medical costs for rare diseases patients
Yes, non-affected people should pay a (minimal) contribution
What do you believe is the primary reason for the lack of therapeutics options in regards to rare diseases?
Not enough money dedicated to basic research - created a knowledge gap
Lack of return on investment for pharma companies due to small market share - Therapeutic options become extremely expensive
Public awareness is limited, leading to no political levarage and lack of incentive
Some "common diseases" are further being broken down into subgroups based on their genetic basis, which would qualify these subgroups as rare diseases - e.g. breast cancer affects 150/100.000 people per year. There are 8.500 different breast cancer subgroups with different therapeutic strategies for many of them. Does it make sense to create a distinction of what is a rare disease simply based on prevalence within the population?
Yes, it makes sense to divide them based on prevalence
Yes, but we need to update the definition
No, we should not make a distinction between rare and common diseases
Thanks for completing the survey! Would you like to win a 50 CHF OrellFüssli voucher?
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