To mark the 30th Anniversary of World Haemophilia Day, Sobi (https://www.sobi.com/en)[TM] have released the 2020 Haemophilia Index which examines the quality of life for people with haemophilia in
The index revealed the following results:
· European haematologists report high levels of treatment satisfaction and physical activity among people with severe haemophilia, showing that with access to appropriate treatment, they are able to live active lives.
· In Europe,
· Globally, half of the countries featured in the study rely entirely on the
The Haemophilia Index (https://liberatelife.eu/haemophilia-index-2020) is a two-part study, comprising of a European survey examining quality of life for people with severe haemophilia in
"Just like anybody else, people living with haemophilia should have the right to pursue the opportunities they desire in life no matter where they live. At Sobi, we are proud to be working with the community to help patients reach for the many possibilities that advances in care have allowed," said
Over the past five years, 17,223 patients have received treatment through the WFH Humanitarian Aid Program (https://www.wfh.org/en/humanitarian-aid-program) as a direct result of the donations provided by Sobi and Sanofi Genzyme. Nearly 1,400 people with haemophilia have initiated prophylactic treatment, of which 441 were under the age of four.
"As 2020 marks the 30th anniversary of World Haemophilia Day, it is our hope that this study can illustrate the progress that has been made in managing the condition so far, while also drawing attention to areas we can work to improve as a community," concluded
About Sobi
Sobi is a specialised international biopharmaceutical company transforming the lives of people with rare diseases. Sobi is providing sustainable access to innovative therapies in the areas of haematology, immunology and specialty indications. Today, Sobi employs approximately 1,400 people across
For more information please contact
Paula Treutiger, Head of Communication & Investor Relations
+ 46 733 666 599
paula.treutiger@sobi.com
+ 46 708 734 095
linda.holmstrom@sobi.com
About the Index:
To begin the study, specialised healthcare professionals across
Next, Sobi examined the reach of humanitarian aid across the world by calculating the percentages of humanitarian aid relied upon to provide treatment in 46 different countries. Finally, the company conducted a timeline review that shows how medications and access to treatment for people with haemophilia have progressed over the years. The result is a new index that gives insight into the state of haemophilia treatment around the world.
Please find the complete methodology and full data set on the results page: https://liberatelife.eu/haemophilia-index-2020
Findings:
The table below reveals the results of a survey of European haemophilia treatment professionals on the levels of physical activity, quality of life and satisfaction experienced by people with haemophilia in their countries, in alphabetical order. All three indicator columns are scored out of 100; 100 representing countries with the highest aggregate ratings. Descriptions of each indicator and the questions asked can be found in the methodology section on the results page.
[2020 Haemophilia Index]
[2020 World Haemophilia Index]
The table above reveals a sample of the full results. To see the full dataset, please see here: https://liberatelife.eu/haemophilia-index-2020
Key Findings:
Below you will find key findings from the study. All figures are scores calculated out of 100, except for the percentage of humanitarian aid.
· Highest Physical Activity (Severe Haemophilia):
· Lowest Physical Activity (Severe Haemophilia):
· Highest Patient Quality of Life (Severe Haemophilia):
· Lowest Patient Quality of Life (Severe Haemophilia):
· Highest Patient Satisfaction Levels:
· Lowest Patient Satisfaction Levels:
· 23 countries in the index have 100% of Factor Provided by the WFH Humanitarian Aid Program.
Instructions
Journalists are encouraged to publish this data and graphics; we kindly ask that you give credit and link to the source: https://liberatelife.eu/haemophilia-index-2020
[1] Based on data available from the World Federation of Hemophilia (WFH) Annual
[2] The WFH Humanitarian Aid Program - www.treatmentforall.org
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