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Sandra Courbier, Rare Barometer senior Manager
15th Mai 2018
RARE BAROMETERVOICES
An evidence-based advocacy tool
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What is Rare Barometer Voices?
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What is the objective of the tool?
Collect patient
experiences and
opinions
Through validated methods
Generate fact and figures
Feed the rare disease community’s advocacy
work
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Rare Barometer Voices is a group of people living with a rare disease who participate in EURORDIS surveys and studies.
Rare Barometer Voices
Patients, families, patient representatives can register
Participants provide useful information for future surveys(disease, gender, age …)
Rare Disease patients can register from any country of the world
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eurordis.org/voices
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Quality of the data
Carry out longitudinal studies
Inform participants on the results of the survey
More detailed anaysis
Advantages of building a panel
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Enables data de-identification
Data storage in France
Secure and GDPR compliant data storage plateform
High level of data protection (Sphinx survey software)
Design of the questionnaire/dissemination/data analysis/results communication.
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Registration page and all surveys and are available in 23 languages
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More than 10 000 patients and families have registered for Rare Barometer Voices so far!
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▪ High proportion of patients and families not engaged in
advocacy activities
Participants’ profile
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Distribution by country
RBV databaseRepartition by country
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➢ Raise awareness about rare diseases➢ National plans advocacy work➢ Funding applications
Data available on the following topics
▪ Impact of rare diseases on daily life▪ Participation in research▪ Data protection and data sharing▪ Experience and accessibility of treatments
Your advocacy tool
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Availability and experienceof treatments survey
Topics covered: availability, type of treatments, access to and affordability of treatments, compassionate use programmes and the off-label use of treatments.
More than 7000 respondents
Breakdowns by :
- country/country grouping (Southern Europe, Eastern Europe, etc...)
- ERN (Epag grouping)
- adult/peadiatric population.
- oncolgy vs other type of diseases treatments
Comparison with the general population on accessibility and evolution compared to the 2017 survey.
Report will be available beginning of June
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▪ 1st Rare Barometer surveyon the impact of rare diseases on daily life, May 2017
▪ Infographic in English for the total European sample
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Infographic in Spanish, for the results in Spain
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Infographic in croatian for the European results
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Significant differences between…
Unmet care and social care needs of RD patients in Easterneuropean countries
Eastern Europe
Belarus
Bulgaria
Czech Republic
Hungary
Poland
Republic of MoldovaRomania
Russian Federation
Slovakia
Ukraine
Northern Europe
Denmark
Estonia
Finland
Iceland
Ireland
Latvia
Lithuania
Norway
Sweden
United Kingdom and Northern Ireland
Southern Europe
Albania
Andorra
Bosnia and Herzegovina
Croatia
Greece
Italy
Malta
Montenegro
North Macedonia
Portugal
Serbia
Slovenia
Spain
Western Europe
Austria
Belgium
France
Germany
Liechtenstein
Luxembourg
Monaco
Netherlands
Switzerland
Results of Rare Barometer Voices surveys: • Juggling care and daily life, the balancing act of the rare disease community, 2017• Access to treatment: unequal care for European rare disease patients, 2017
and…
Other European countries :
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% of rare disease patients who didn’t get the medical treatment they needed in the past 12 monthsbecause ….
Eastern Europe
Other European countries
22%
14%
37%
21%
25%
17%
They could not pay for it
The waiting list was too long
It was not available where they live
+8
+16
+8
Greater difficulties in accessing treatments
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Everyday life impact of the rare disease on families is more important
Eastern Europe
Other European countries
55%
39%
Spend more than 2 hours per day on illness-related tasks
+16
This can partly be attributed to less support they receive with (% of uncovered needs):
Day care (32%, +11)
Adapted holidays and therapeutic recreation (65%,
+21)
Adapted school (28%,
+13)
Support to adapt your house to your
needs (37%, +6)
Disability benefits (63%,
+11)
Rehabilitation services and therapies (60%, +12)
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Greater financial pressure on families
Eastern Europe
Other European countries
81%72%
Costs are high
+9
76%
61%
Costs are hard to manage
+15
Respite care (73%, +16)
Treatment and medication(51%, +18)
Special diet(58%, +8)
Rehabilitation therapies (61%, +21)
Appointments with healthcare
professionals (42%, +11)
Hospital admissions
(29, +9)
Home care services(70%, +12)
% who can’t afford it or think it’s hard to manage
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People living with a rare disease from eastern Europe rely more on the internet for information on treatment and care
Eastern Europe
Other European countries
36%
29%
Internet is main source of information
+7
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Thanks for your attention!