With enduring shock and sadness, we think of our community members and others affected by the current challenging times, and are working tirelessly to provide support where possible.
The EHC have been working with our NMOs in the neighbouring countries and region to identify their needs, understand the key areas of support we may provide, as well as with the WFH and other relevant stakeholders to ensure that patients with bleeding disorders who are displaced and the neighbouring NMOs who are affected by the current crisis are adequately covered in terms of access to treatment and care and supported.
Many of you have been asking, how you can help. Below are outlined a few possibilities to help, as well as to receive support from the EHC in your efforts to help.
Emergency Displacement Fund
The EHC are launching today a short-term* funding stream called the Emergency Displacement Fund to help support NMOs who are dealing with the direct displacement of people with a bleeding disorder and their families from situations of armed conflict. A simple application process with rapid assessment has been established. Decisions will be made on a case-by-case basis based on the prevailing context.
The funding is intended to help our NMOs supply critical items for displaced people with bleeding disorders entering their country and coming under their care, for example, but not limited to:
- Travel to a town/city with a haemophilia centre
- Initial accommodation if required (for maximum 14 days) while receiving bleeding disorder care
- Provision for communications with treatment centres (e.g. call charges, calling cards, power banks, etc.)
- Non-prescription medicines (excluding factor or non-factor concentrates)
- Medical equipment (e.g., feminine hygiene products, crutches, mobility aids)
- Provision of psychosocial support for families
- Additional support deemed necessary by the NMO can be applied for with a justification
For more information on the Emergency Displacement Fund please see attached application form. You may also contact Fiona (fiona.brennan[at]ehc.eu) or Kristine (kristine.jansone[at]ehc.eu) who will prioritise supporting you.
Providing up to date information to the displaced individuals/ families
The EHC have been facilitating the contacts and transmission of up-to-date information about support to the displaced families in the countries within the region, but also beyond. This is done via a daily bulletin of updated information aimed at our community members in Ukraine, with the NMOs providing contacts and information in copy. The information includes key contacts for NMOs / treatment centres, the support NMOs are in a position to offer, national resources and legal requirements / provisions, border updates etc., as well as updated information regarding treatment centre locations: http://www.hclocator.org/
If you are willing to add information that can be helpful to those fleeing Ukraine into your country to this bulletin, please write to Kristine (kristine.jansone[at]ehc.eu).
Matching the needs with relevant support
The EHC are working in collaboration with the WFH in terms of access to humanitarian aid and understanding the support we can provide for those remaining in Ukraine.
In the meantime, some of our NMOs countries are substantially overwhelmed by the number of people arriving to their country. To alleviate this burden, the EHC is encouraging our NMOs to work with their governments to ask for relocation of the displaced people with bleeding disorders in their country or to countries who will be in a position to provide treatment and care to patients. We have previously shared a letter to all NMOs to support this process from EHC / WFH – see attached. If you would like any assistance or guidance on how best to approach this we would be happy to discuss further with you.
In order to determine where the best support could be provided to the specific displaced individuals/ families, we are looking to match the needs to support available. To this end we have developed a form that our NMOs can fill to indicate the support they are in position to offer. Thank you!
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.
