Note: The following appears in our Spring 2016 edition of Dateline Federation. Please see the full issue for all the amazing community support shown for Bleeding Disorders Awareness Month!
For the past 30 years, the bleeding disorders community has unofficially recognized Hemophilia Awareness Month during the month of March. The name originated from a proclamation made by President Ronald Reagan in 1986. HFA’s messaging has always aimed to educate community members and the general public with information about all bleeding disorders, so the organization was pleased to support a renaming of this yearly celebration.
The National Hemophilia Foundation (NHF) recently petitioned the US Department of Health and Human Services to have Bleeding Disorders Awareness Month placed on its National Health Observances list for March, and succeeded. HFA congratulates NHF on their effort to recognize all people living with bleeding disorders with a more inclusive message.
Before we changed the name of our awareness campaign here at HFA, however, we felt it was critical to hear what community members thought first. HFA is a national, yet community-based, organization so we wanted input from our community to determine how best to serve its needs. In February, HFA conducted a survey among its members asking if they wanted to recognize March as Bleeding Disorders Awareness Month, Hemophilia Awareness Month, or if there was an alternative name they would wish to see. More than 260 individuals responded to the community’s awareness month survey! Bleeding Disorders Awareness Month was the strong community preference and HFA proceeded accordingly with renaming the annual celebration.
Each year, HFA’s social media campaign on Hemophilia Awareness Month reaches 300,000+ people and last year it caught the interest of Sanjay Gupta, MD at Everyday Health, a provider of digital health and wellness solutions. In 2014, Dr. Gupta’s staff saw our efforts on social media and reached out to us about working together on an educational piece about hemophilia. HFA is pleased to have garnered this recognition and was proud to partner with Dr. Gupta and Everyday Health.
This year, to recognize Bleeding Disorders Awareness Month, HFA again harnessed the power of social media and provided community members with information and resources to learn more about bleeding disorders, to educate themselves and others on our community’s evolution, and to honor our past leaders and activists.