The ERIN Summit 2022 will take place in Barretstown, Ireland from Thursday 1 December in the evening until Sunday 4 December at lunchtime. The purpose of the ERIN Summit is 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. Besides the community building aspect, the ERIN Summit will also offer possibilities to the participants to educate and empower themselves and to improve the quality of their lives. In addition, the Summit will be the place to spend time in a relaxing environment and enjoy activities together. Please see below for more details!
What: European Rare and Inhibitor Network (ERIN) Summit
When: 1-4 December 2022. The programme will start on at 17:30 on 1 December and end at lunchtime on 4 December.
Where: Barretstown, Ireland
Event language: English, with interpretation into Russian
For whom: The ERIN Summit will be an event dedicated exclusively to people with haemophilia and inhibitors, and extremely rare bleeding disorders, their caregivers and family members. We kindly invite each NMO to send up to 4 individuals in total from the below categories, respecting the outlined quota (a maximum of 3 individuals affected by an inhibitor and a maximum of 2 individuals affected by an extremely rare bleeding disorder).
Programme: Consult the draft programme here.
Registrations: Registrations for this event are OPEN and will close on 1 November 2022. Please contact your NMO if you wish to register!
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.
