The Lebanese Association for Hemophilia and global research and treatment field leader Novo Nordisk have teamed up to provide career orientation to children and youth living with the rare and predominantly genetic bleeding disorder, characterized by either a partial or complete lack of a clotting factor causing abnormally lengthy bleeding.
The move comes after recently published findings from HERO, or “Hemophilia Experiences, Results and Opportunities,” the world’s largest multinational and multi-method study of life with hemophilia which surveyed 1,386 people in 11 countries confirmed that people with hemophilia endure specific and often unnecessary work-related hurdles.
Activities focused on introducing career options to 21 children and young people living with hemophilia, aged five to twenty four, by having some of them shadow a day in the working life of Novo Nordisk employees in various functions, and exposing younger children to educational play at the KidzMondo theme park in Beirut, which specializes in presenting a glimpse of real life and real careers to kids. Presentations from career specialists followed, addressed to the older members of the group.
“People living with hemophilia can lead fully productive lives, which is what we want for our children and youth, and why we need to encourage them to take their futures into their own hands,” said Solange Sakr, President of the Lebanese Association for Hemophilia. “The general public and potential employers also need to recognize this, to avoid unnecessary discrimination in hiring decisions.”
HERO, conducted to better understand their life conditions and challenges, showed that people with hemophilia and their parents are generally educated and working, but that the disorder challenges job options.
The study also showed that although most people with hemophilia had received formal education and the majority was employed,1 many select their jobs taking into account their hemophilia needs despite feeling that current treatments enable them to work in most situations.2
Around 80% of the study’s respondents also reported a negative impact of hemophilia on working life2, and some said they believe they lost a job because of hemophilia.1
“Novo Nordisk is committed to Changing Possibilities in Hemophilia,” said Stathis Psimmenos, Novo Nordisk Lebanon General Manager. “We work towards a future where all people living with hemophilia have the opportunity to lead the life they desire by strengthening understanding of hemophilia in society, improving rates of diagnosis and access to care, advancing treatment through innovation, and supporting education and global research.”
Novo Nordisk also provides global career counseling and professional support to eligible 18-30 year-olds living with bleeding disorders. They can apply through NovoSecure™ (mynovosecure.com) to have expert career counselors work with them to help uncover the right career, transition to a new opportunity, or simply strengthen their professional skill set.
Personalized, private career counseling, conducted over the phone or Skype, helps participants gain a deeper understanding of what’s important to them and how that can resonate with career choices and opportunities. Participants create a game plan and practice for interviews, while gaining confidence and honing in on skills and capabilities.
Novo Nordisk has been working closely with the Lebanese Association for Hemophilia since 2008, collaborating on a number of activities to raise awareness of the disorder across the country, enhance fundraising for patient care through the Bleeding Voices concert series, and boost access to medication for people living with hemophilia.