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.
Thursday 1st February 2024 is the second European von Willebrand disease (VWD) Awareness Day, instigated by the European Haemophilia Consortium’s VWD working group. Find out more here. 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, labour 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. The UK Haemophilia Society have released a booklet explaining VWD inheritance, symptoms, diagnosis, treatments and advice for patients and carers here. Follow the activity on social media using the hashtags #VWDday #VWDday2024
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 bleeding disorders include VWD (the most common bleeding disorder), haemophilia A (FVIII deficiency), haemophilia B (FIX deficiency), Glanzmann’s thrombasthenia and platelet disorders, among many others. 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. Interestingly, this year, Rare Disease Day takes place on 29th February, the rarest day ever. Follow on social media using the hashtags #RareDiseaseDay2024 #RareDiseaseDay #RareDiseases
Find out more about Rare Disease Day here, VWD Awareness Day here and bleeding disorders in general 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. Find out more here. 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, labour 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. The UK Haemophilia Society have released a booklet explaining VWD inheritance, symptoms, diagnosis, treatments and advice for patients and carers here. Follow the activity on social media using the hashtags #VWDday #VWDday2024
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 bleeding disorders include VWD (the most common bleeding disorder), haemophilia A (FVIII deficiency), haemophilia B (FIX deficiency), Glanzmann’s thrombasthenia and platelet disorders, among many others. 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. Interestingly, this year, Rare Disease Day takes place on 29th February, the rarest day ever. Follow on social media using the hashtags #RareDiseaseDay2024 #RareDiseaseDay #RareDiseases
Find out more about Rare Disease Day here, VWD Awareness Day here and bleeding disorders in general here