The EHC invites you to save the date for the European Rare and Inhibitor Network (ERIN) Summit 2024 taking place in Zagreb, Croatia, from November 28th to December 1st. It will be our second community-facing event aiming to offer a special time and space for all people with extremely rare bleeding disorders and people with haemophilia who have inhibitors, as well as their family members and caregivers.
Taking place once a year, this event will serve as ground zero for community-building and for establishing and maintaining peer-to-peer communication and advocacy networks. The ERIN Summit will also offer possibilities to the participants to educate and empower themselves and to improve the quality of their lives.
Registration is not open yet, but you can have a sneak peek at our draft programme below!
| What | European Rare and Inhibitor Network (ERIN) Summit |
| When | 28 November – 1 December 2024 |
| Where | Zagreb, Croatia |
| For whom | Patients with extremely rare bleeding disorders, patients with haemophilia who have inhibitors, as well as their family members and caregivers |
| Language | English |
| Programme | Draft available here |
| Registrations | Registrations will open soon. |
| EHC Staff contact person | Fiona Brennan |
What is the ERIN?
In 2022, the EHC’s European Inhibitor Network (EIN) was expanded and became the European Rare and Inhibitor Network (ERIN), including extremely rare bleeding disorders, such as platelet disorders or extremely rare factor deficiencies.
The objective of the programme is to understand and prioritise the needs of people with ultra rare bleeding disorders, both at a community level as well as at a policy-making level, and to empower people with ultra rare bleeding disorders to drive the research in the field of ultra rare bleeding disorders thus taking steps to improve the treatment and care for these patient cohorts.
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.
