Celebrating two important awareness campaigns for people with bleeding disorders

In February, we celebrate two awareness days for our bleeding community: European von Willebrand Disease Awareness Day on 1st February and Rare Disease Day on 29th February. Overall, there are 300 million people living with a rare condition who often experience misdiagnosis and treatment inequity. Rare Disease Day, established in 2008, is patient-led and plays a crucial role in raising awareness of rare diseases and building an international rare disease community. Rare Disease Day is coordinated by EURORDIS as well as more than 65 national patient organisations and aims to improve access to healthcare, diagnosis and therapies for people living with rare diseases. This year, Rare Disease Day takes place on 29th February, the rarest day ever. View more details here.

Thursday 1st February 2024 is the second European von Willebrand disease (VWD) Awareness Day, instigated by the European Haemophilia Consortium’s VWD working group. The aim of VWD Day is to create a wider VWD community, raise global awareness of VWD and importantly, hope to raise awareness among people with symptoms who still remain undiagnosed. The first ever VWD Day was 1st February 2023 and featured the work of Latvian artist Agate Lielpētere, who created the project “How Did That Happen” highlighting the common symptom of VWD: bruising. VWD is the most common of the bleeding disorders, and although VWD may affect up to 1% of the population, many remain undiagnosed and unaware that they have a bleeding disorder. The National Bleeding Disorders Foundation explains that VWD affects men and women equally, however, women experience complications during menstruation, pregnancy, labor and delivery. Some doctors are not familiar with bleeding disorders in women, which results in many of women going undiagnosed or misdiagnosed, risking serious complications. View more details here.

Women and girls with bleeding disorders (WGBD) often experience heavy periods, lack of iron/anaemia, unexplained bruising, long-lasting gum bleeds or nosebleeds as well as post-partum bleeds. The pathway to diagnosis may take many years and many patients are not diagnosed until adulthood due to lack of awareness and misconceptions that bleeding disorders only affect men. To help raise awareness of the difficulty some women face in finding a diagnosis for their symptoms, the European Hemophilia Consortium (EHC) have developed a symptom checklist for anyone concerned about their symptoms here.

For more information on VWD you can watch our webinar “Female factors to consider in von Willebrand disease: Heavy menstrual bleeding and peri-partum care” which features gynaecological and obstetric perspectives around the care of women with VWD, here.

Further e-learning modules provided by the European Association for Haemophilia and Allied Disorders (EAHAD) Academy on rare bleeding disorders can be found here.