Each year the European Haemophilia Consortium (EHC) surveys its members on a particular aspect related to comprehensive care in haemophilia and other rare bleeding disorders.
Here below you will find all of our surveys dating back to 2009.
For any additional information regarding surveys and data collection, please get in touch with Laura Savini at the EHC office.
In 2009, the EHC surveyed its members on the state of haemophilia care in their country. Nineteen members replied on matters such as access to treatment and various comprehensive care services and home treatment.
This survey came just after the adoption of the European Principles of Haemophilia Care setting the gold standard for haemophilia care in Europe. These principles gave the spur for this survey to evaluate where European countries were in relation to the gold standard of care for haemophilia.
The results of the survey were published in 2010 in the Haemophilia Journal.
In 2012, the EHC repeated its 2009 survey on the state of haemophilia care in Europe. For this edition, 35 EHC member countries replied.
The survey results were published in the Haemophilia Journal in 2013.
In 2014, the EHC surveyed its members on the practices related to the purchase of coagulation factor concentrates for the treatment of haemophilia and other rare bleeding disorders. Thirty-eight EHC members replied and the survey was published in the Haemophilia Journal in 2015.
This survey was instrumental in highlighting the role and importance of patients in the tender process.
In 2020, the EHC is repeating this survey to track the evolution in tender practices in its member countries. This is important for two reasons. On the one hand, the treatment landscape has changed enormously since 2014 and it will be interesting to see how these processes have adapted to novel treatments such as non-replacement therapies. On the other hand, the EHC has been carrying out a health-economics training for its members with a focus on health-economics and hopefully, this survey will assess the impact of this training via the work of local patient organisations to advocate for more access to treatment.
In 2015, the EHC surveyed its members again on the state of haemophilia care in Europe. Thirty-seven countries replied and again the article was published in the Haemophilia Journal.
This edition of the survey was heavily influenced by the adoption by the Council of Europe of its Resolution CM/Res(2015)3 on Principles Concerning Haemophilia Therapies. This resolution set a new gold standard for haemophilia care in Europe. You can read more about this initiative here.
In 2016 and early 2017, the EHC surveyed its members on the impact of the contamination of hepatitis C (HCV) on people with haemophilia and other rare bleeding disorders in their countries.
This was a particularly difficult survey to carry because there were great variabilities in how the situation was handled in each country. In addition, the marginalisation and discrimination faced by many with HCV and the respect of their privacy made it furthermore difficult to identify and correctly quantify the impact that this contamination had on the rare bleeding disorders community in Europe.
The findings of the survey were published in the Journal of Haemophilia Practice in 2018.
In 2017 and early 2018, the EHC carried out a survey on barriers and challenges faced by women with congenital bleeding disorders to access adequate treatment and care. The survey also looked at the impact of bleeding disorders on various aspects of the everyday life of women affected by these disorders.
The survey, which gathered over 700 individual responses from across Europe was published in the Haemophilia Journal in 2019.
This survey marks a momentum for women with bleeding disorders within the EHC that goes in par with the creation of a dedicated committee and the hosting of the first EHC Conference on Women and Bleeding Disorders and ramping up of advocacy activities.
In 2018, the EHC carried another survey to evaluate the state of haemophilia care in Europe. This survey came after the Council of Europe adopted a revised version of its resolution on haemophilia treatment (CM/Res(2017)43).
In 2020, the results of the survey were published in the Orphanet Journal of Rare Diseases. This article not only looks at the 2018 results but looks at the evolution of haemophilia care in Europe for over 10 years (2009-2018). The EHC is currently working on a graphic and interactive tool to facilitate the viewing of these results.
In 2019, the EHC launched a survey on challenges and barriers faced by people affected by Von Willebrand Disease in Europe. This survey was spurred by a growing international focus and momentum for this disease with an increased awareness of the need of better diagnosis, treatment and care for this patient population.
The EHC is currently analysing the results and gathering the findings in an article, which will be submitted to a scientific journal for publication. The EHC intends to use the results of the survey to inform the work of its newly (2020) establishment working group on Von Willebrand Disease.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
