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 and the Chair of the EHC Women and Bleeding Disorders Committee, 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?