November…these past 4 months have been intense for me. I wanted to post so many things but I couldn´t find the right images or words. But, I was always feeling doing the things I love; working with the world of hemophilia is still challenging and a source of joy.
After more than 17 years in contact, I feel blessed to be part of a team at the hospital, of so many families and people who managed their lives having hemophilia.
I have met new and continue to meet other professionals committed and passionate about what they do! which is great…I feel part of a big beautiful web.
SO, just to share my latest participations in 2 projects i cherrish:
1) i have been working with some colleagues on project HERO (Hemophilia Experiences Results and Opportunities) where we did a final draft of the Protocol and Questionnaire on psychosocial issues related to people with hemophilia A, B and inhibitors. Now we are waiting to be approved by the whole members of the international advisory board. If somebody wants to know more about the project go to Novo Nordisk site, or google Hero project/ Novo Nordisk.
2) Since Wednesday i am at the hospital das Clínicas where i work with a team of Brazilian and Canadian professionals on the Cross Cultural Validation of the CHO-KLAT ( Canadian Hemophilia Outcomes for Kids Life Assesment Tool) quality of life questionnaire.
It is so important to dedicate time and will to adapt a tool to each culture: trying to find the best way to express things!