EHC is pleased to announce that the call for nominations for your youth members to participate in the EHC Youth Leadership Workshop 2023 titled “Stand Up, Speak Out, Join the Conversation” is now open. The workshop will be held in person from 21-23 April in Brussels, Belgium.
The 2023 workshop will seek to equip the participants with various tools and strategies to be more actively involved in their NMOs. The workshop will be thematically built on three core modules: volunteering and youth engagement in the NMO, a strategic approach to the work of a patient organisation, and engagement with the pharmaceutical industry and other external stakeholders.
The programme will consist of a combination of experienced trainers’ interactive presentations and many practical and interactive exercises, which will help the participants consolidate the knowledge gained. You can see the draft programme here.
The workshop is intended to benefit both the participants and the nominating NMOs by supporting the growth and development of NMOs’ volunteer communities. Therefore we ask you only to nominate candidates who meet the following criteria:
- Is a patient with, or carrier of, haemophilia, VWD or another rare bleeding disorder;
- Is between 21-30 years old;
- Has at least one-year demonstrated existing or prior commitment to the NMO;
- Is fluent in written and spoken English and can actively engage in the interactive training of the workshop;
- Will actively participate in the training and any requested follow-up activity or reporting;
- Has the capacity to stay actively involved or become further engaged with your NMO, as well as the ability to engage other youth;
- Is available and willing to travel to Belgium during the dates Friday 21 to Sunday 23 April 2023 please consult the preliminary programme for specific timings.
There is no limit to the number of nominations each NMO can submit. However, there are only 16 slots available in the workshop. The EHC Youth Committee will review all the applications. Candidates will be selected based on merit, considering the criteria outlined above. Individuals who have already participated in previous EHC Youth Leadership Workshops are discouraged from applying. Individuals who have previously applied but were not selected and did not participate in previous Youth Leadership Workshops are invited to re-apply if they still meet the criteria.
| What | Youth Leadership Workshop 2023 |
| When | 21-23 April 2023 |
| Where | Brussels, Belgium |
| For whom | Volunteers from EHC members aged 21 to 30 years old.
Participants must:
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| Language | English |
| Programme | Consult the preliminary programme |
| Registrations | To nominate their candidate, NMOs must send the following documents to Fiona Brennan by Monday, 30 January 2023, at the latest:
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| EHC staff contact person | Fiona Brennan |
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.
