Welcome to the resource page for people with rare bleeding disorders. Here, you will find additional resources from the video developed by EHC for World Haemophilia Day 2022 to raise awareness about issues faced by people with rare bleeding disorders.
Prof Alison Dougall, Assistant Professor and Consultant in Dental Science, Member of the EHC MASAG, Ireland.
All too often, we hear about serious bleeding complications in the mouth. Can you advise what is normal for patients with a bleeding disorder?
- Read the WFH guidelines for dental treatment of patients with inherited bleeding disorders published in 2006.
- Read the interview with the specialist dentist, Dr Alison Dougall, on the importance of dental care for people with inhibitors. From the EHC ‘Happy Half-Hour with an inhibitor expert’ from November 2019.
- Read the article on ‘Dental Management of patients with inherited bleeding disorders: a multidisciplinary approach.’ General Dentistry, November/December 2017.
- Read the ‘Guidance on the dental management of patients with haemophilia and congenital bleeding disorders’ published in the British Dental Journal in November 2013.
- Try out the EHC educational app on novel therapies in haemophilia and other rare bleeding disorders, EHCucate.
Evelyn Grimberg, a patient with Glanzmann’s Thrombasthenia, EHC SC member, the Netherlands.
Where have you found the right information as a person affected by a rare bleeding disorder?
- Consult the EHC webpage on rare bleeding disorders.
- Consult the website of the Great Ormond Street Hospital for Children.
- Consult the North American and European rare diseases databases.
- Get familiar with EURORDIS and their activities and resources.
- Check out the resources provided by the National Haemophilia Foundation.
- Inform yourself with the Rare Coagulation Disorders Resource Room and the Rare Bleeding Disorders Network.
- Try out the EHC app on novel therapies, EHCucate.
Debra Pollard, Advanced Nurse Practitioner and Member of the EHC MASAG, United Kingdom.
Body image can be a huge issue for people with bleeding disorders. Can you offer any advice, particularly for younger girls?
- Read about the full bloom project on body-positive parenting.
- Think differently about beauty with the ‘What’s underneath project.’
- More resources on body positivity at the Looking Glass.
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.
