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New Data Shows Varied State of Haemophilia Treatment Around the World: Sobi

STOCKHOLM, April 17, 2020 /PRNewswire/ -- To mark the 30th Anniversary of World Haemophilia Day, Sobi™ have released the 2020 Haemophilia Index which examines the quality of life for people with haemophilia in Europe, and the reach of humanitarian aid across the globe.

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, Italy reports the highest levels of physical activity among people living with severe haemophilia, while Germany indicates the highest quality of life. Both Switzerland and Sweden report the greatest patient satisfaction levels.
  • Globally, half of the countries featured in the study rely entirely on the World Federation of Hemophilia Humanitarian Aid Program to provide medication for haemophilia treatment.

The Haemophilia Index is a two-part study, comprising of a European survey examining quality of life for people with severe haemophilia in Europe, and a global index looking into the far-reaching effects of humanitarian aid1,2. Combined, the two sections of the Haemophilia Index reveal the differences in opportunities available for people living with haemophilia in countries around the world.

"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 Philip Wood, Head of Haematology at Sobi.

Over the past five years, 17,223 patients have received treatment through the WFH 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 Philip Wood.

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 Europe, North America, the Middle East, Russia and North Africa. In 2019, Sobi's revenues amounted to SEK 14.2 billion. Sobi's share (STO:SOBI) is listed on Nasdaq Stockholm. You can find more information about Sobi at

About the Index:

To begin the study, specialised healthcare professionals across Europe were surveyed about their opinion on the levels of physical activity, quality of life and satisfaction experienced by people with haemophilia in their countries. To provide context, key metrics on the rates per capita in each country of registered people with haemophilia, and the amount of available medication used to treat those lacking Factor VIII (Haemophilia A) or Factor IX (Haemophilia B) were also included.

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:


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.

The table above reveals a sample of the full results. To see the full dataset, please see here:

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): Italy (100.0), followed by the Slovak Republic (96.6) and Norway (96.1).
  • Lowest Physical Activity (Severe Haemophilia): Estonia (40.5) , followed by Belgium (69.1) and Poland (76.2).
  • Highest Patient Quality of Life (Severe Haemophilia): Germany (100.0), followed by Switzerland (98.3) and Italy (95.0).
  • Lowest Patient Quality of Life (Severe Haemophilia): Poland and Spain (both 71.4), followed by Estonia and Belgium (both 78.2), and Hungary (79.8).
  • Highest Patient Satisfaction Levels: Switzerland and Sweden (both 100.0), followed by Germany (98.4) and Italy (97.9).
  • Lowest Patient Satisfaction Levels: Estonia (42.9), followed by Poland (84.1), Hungary and Portugal (both 89.1).
  • 23 countries in the index have 100% of Factor Provided by the WFH Humanitarian Aid Program.


Journalists are encouraged to publish this data and graphics; we kindly ask that you give credit and link to the source:

1 Based on data available from the World Federation of Hemophilia (WFH) Annual Global Survey report (2016-2018).
2 The WFH Humanitarian Aid Program -

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SOURCE Swedish Orphan Biovitrum AB

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Last Updated: 17-Apr-2020