The European Haemophilia Consortium (EHC) is looking for an experienced, analytical and passionate European Public Policy Lead to join its small, dynamic team of staff and volunteers.
What about this role at the EHC?
The European Haemophilia Consortium (EHC) is an international patient-led and non-profit organisation representing 48 national patients’ organisations (NMOs) for people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe. The EHC team is currently composed of a small group of 7 individuals of multiple nationalities. The team’s work is co-implemented together with a large network of volunteers, consultants, and service providers. The EHC was founded in 1989 but has recently undergone substantial organisational growth, now stabilising.
The ideal candidate will have some content background in public health, rare diseases and the role of civil societies in shaping health policies and legislations. They will possess excellent attention to detail, proven organisational and project management skills, and the ability to communicate eloquently and flawlessly in English with a broad range of audiences in a compelling and captivating manner. They must also be able to work flexibly and collaboratively within a close-knit team and patient community in cross-cutting ways.
How to apply?
Applications should be submitted to Zita Gacser, EHC Behavioural Change Lead, at zita.gacser[@]ehc.eu by Monday, 24 June 2024.
The first round of interviews will be held in early/late July 2024.
Applications should consist of all of the following:
- Letter of motivation
- CV
- Range of expected gross monthly remuneration
- Telephone and email contacts for 2 references (these will be contacted after the first interview)
Please note that incomplete applications will not be considered.
We are grateful for all applications and thank all candidates in advance for their interest, time and motivation. Unfortunately, because we are a very small team with a heavy workload, we will only contact short-listed candidates. We thank you in advance for your interest and look forward to your application.
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.
