This week we are preparing for the hugely anticipated 1st European Women and Bleeding Disorders Conference in Frankfurt, Germany. As we approach the mid-year point of 2019, we reflect and report on our work and progress in the first half of 2019. The second half of 2019 promises to be as productive and exciting.
January
Happy ½ Hour with Dr. Maria Elisa Mancuso talks about surgery. The Youth Leadership Alumni event is held in Amsterdam January 25-27. EHC Now! publishes its 2018 compilation edition.
February
EHC is strongly represented with our partners at the European Association for Haemophilia and Allied Disorders (EAHAD) #EAHAD2019 conference from Prague. EHC publishes Novel Treatments Review in Haemophilia and Other Bleeding Disorders, 2019 Issue One. EHC launches EHConversations with its premiere series on gene therapy, the first major piece of patient-focused discussion and education on gene therapy and haemophilia. EHC and EAHAD launch European Principles of Inhibitor Management available in video. Health care professionals aim for the highest level of treatment for inhibitor patients, who may need specialised nursing care, physiotherapy, psychosocial support. EHC Inhibitor Working Group meets in Lisbon for productive and informative sessions. The Future of Comprehensive Care and Outcomes Round Table is held February 20th with a at capacity group at the European Parliament. Happy ½ Hour with psychotherapist Nicola Dunn is held.
March
EHC celebrates International Women’s Day with a popular video production on women and science. The Youth Fellowship Programme announces its first major project with Ireland, Hungary and Serbia. EHC completes rebuild of its website https://www.ehc.eu. EHC CEO concludes productive meetings in North Macedonia with North Macedonian NMO in advance of the EHC 2019 Conference in Skopje, October 4-6.
April
EHC honours World Haemophilia Day and launches #EHCelebrate, the 30th anniversary of the founding of the European Haemophilia Consortium, with the Every Day is a Winding Road Campaign, where members of the community can send e-cards and videos. EHC creates new logo for 30th anniversary from designer Marion Brauer and launches new animated explainer video in English, Russian, French and Spanish, What is EHC? EHC launches high-impact infographics on the bleeding disorders community. EHC participates in a successful campaign on #WorldHealthDay with the European Patients’ Forum to call on the EU to deliver #HealthForAll. The 2019 Youth Leadership Workshop is held in Amsterdam. EHC CEO Amanda Bok speaks at the World Orphan Drug Congress in Maryland, USA. Happy ½ Hour discusses employment issues and the bleeding disorders community with Specialist Training Provider in the Disability Sector Traci Marshall-Dowling.
May
EHC and partner EAHAD publish Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the EHC and EAHAD in Haemophilia Journal by EHC PARTNERS Consultant Declan Noone, EHC Women and Bleeding Disorders Committee Chair Naja Skouw-Rasmussen, Michelle Lavin, Karin van Galen and Rezan Kadir https://www.ncbi.nlm.nih.gov/pubmed/31034126. The “Happy 1/2 Hour with an Expert in Haemophilia Care” in May will focus on parenting a child with inhibitors. The guest will be a mom who has experience of life with inhibitors https://bit.ly/2DWdW9e . EHC thanks the MEP Rare Bleeding Disorders Group and supports them in the May 23-26 European Parliament elections. The First European Women and Bleeding Disorders Conference will be held May 24 -26.
June
EHC will hold the EHC Leadership Conference in Brussels June 20-23. EHC will hold a Round Table discussion on Pain Management June 11 in Brussels. EHC will launch the next installment of EHConversations in the launch of a video about the experience and future of the bleeding disorders community and hepatitis C. EHC will publish its report on the PARTNERS programme.
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.
