Educational Videos / Promotional Materials regarding NMO outreach
- Some educational videos topics could be but are not limited to venous access / physical activity / living positively with a bleeding disorder.
- Promotional material videos could be made to encourage engagement with an NMO and what an NMO can do for the patient.
- Promotional materials to encourage patients to join a Patient Organisation — perhaps done in partnership with a treatment centre.
- Promotional materials to encourage NMOs to reach out to other bleeding disorders such as platelet disorders, VWD and other RBDs – perhaps done in partnership with a treatment centre.
NMO Exchange
- NMOs could be given an opportunity to visit other NMOs to facilitate mutual learnings.
- NMO Audits – focused visits to multiple NMOs to allow youth to audit or examine various specified areas of work.
Hepatitis C – Patient Outreach
In line with one of the EHC’s objectives to eradicate hepatitis C in the bleeding disorder community a project could be developed in conjunction with a treatment centre to promote education and awareness of hepatitis C treatment for patients.
Surveys
Surveys can be carried out on a wide variety of areas to explore different issues / areas of interest in our community for example quality of life / patient outreach / NMO services etc.
Centre Visits
As the projects are cross-border in nature, it may be interesting for teams to explore differences in centres across Europe.
Visiting EUHANET Centres
Ted Talks
This could be a series of short educational / promotional videos which can be dispersed throughout the community on various relevant topics.
Awareness Campaigns
The development and promotion of awareness campaigns to promote bleeding disorders / positive living / adherence / physical activity etc.
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.
