Welcoming a new member: European Haemophilia Consortium
Part of our Annual General Meeting in May was devoted to approving new members. We welcomed four new Full Members and one new Associate Member. This month we asked three core questions to Amanda Bok, CEO of the European Haemophilia Consortium (EHC), one of our new Full Members.
What does your organisation do?
Our organisation gathers the European national haemophilia patient associations from 44 countries in Europe including all 28 EU Member States.
We are working to reduce the burden of the disease on both the individual and on society. Our mission is to improve the quality of life of people with haemophilia in Europe. The EHC advocates on behalf of patients and facilitates training, consultation, discussion and dissemination of information on important issues related to bleeding disorders.
What can your organisation bring to EPF?
We will bring more than 25 years of experience as a patient-led organisation, including specific track record and experience in areas including but not limited to data collection and analysis (frequently published in the Haemophilia journal, for example); economics and Health Technology Assessments; surveillance and monitoring of blood safety; standardisation and certification of treatment centres across Europe; training of patient leaders and youth, etc.
We also bring a unique perspective and unique experiences given that we represent a ‘treatable’ rare disorder, haemophilia, which has good diagnosis and treatment options, and where challenges are evolving – including for example meeting the needs of older patients with haemophilia.
How would your organisation like to benefit from EPF membership?
We look forward building an equal partnership and tangible collaboration in areas of mutual interest and importance. We also wish to exchange experiences and best-practices, also with fellow EPF members, with the provision of mutual support when and as needed.
Contact: Camille Bullot, Membership Officer, email@example.com.
Picture credits: © EHC Board from left to right: Jordan Nedevski, Vice-President Finance Bulgarian National Member Organisation (NMO); Olivia Romero-Lux French NMO; Traci Marshall-Dowling, Irish NMO; Brian O’Mahony, President Irish NMO; Alain Weill (ex-officio), President of the World Federation of Haemophilia / French NMO; Amanda Bok (ex-officio) EHC staff; Giuseppe Mazza, Italian NMO; and Radoslaw Kaczmarek, Polish NMO.