The WHD2019 campaign will feature examples of WFH outreach initiatives such as organizing regional workshops, raising awareness of bleeding through media coverage or training health professionals and collecting data. It will combine these examples with submissions from our community about outreach efforts in their own regions or ideas about what would be helpful for future initiatives.
Every April 17 World Haemophilia Day is recognised worldwide to increase awareness of haemophilia and other inherited bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.
World Haemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH) which chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday.
April 17, 2019, will mark the 30th World Hemophilia Day
With only 440,000 people with haemophilia worldwide, few people have met someone with the disease. Fewer still can picture what life must be like when living with a bleeding disorder, or to care for someone with the condition. World Haemophilia Day provides an opportunity to talk to family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder.
A carrier of haemophilia is a female who has an abnormal X chromosome carrying the hemophilia gene. One of her two X chromosomes has a mutation of the factor VIII or factor IX gene, resulting in decreased levels of clotting factor VIII or IX, respectively.
Most carrier women do not show any symptoms of bleeding characteristic of hemophilia. But few with low levels of factor VIII or factor IX activity may face some bleeding problem at the time of surgery or have some other symptoms like excessive or extensive menstrual bleeding period, blue patches on the body.
When there is a family history of haemophilia, it is now possible to identify females who carry the haemophilia gene. Women, who know they are carriers, or might be carriers, may have options for prenatal diagnosis to obtain information on fetal status.
According to National Blood Transfusion Council under National Aids Control Organization (NACO) guidelines to all state/UTs administration patients suffering from thalassemia, sickle cell anemia and haemophilia should be provided blood free of cost.
The Rashtriya Bal Swasthya Karyakarama (RBSK) launched under the National Health Mission (NHM), provides early detection and treatment of children suffering from genetic disorders.