Sharing knowledge and hope with pandemic positivity
Albania’s first project supported by the Novo Nordisk Haemophilia Foundation kicked off its activities just in time for World Haemophilia Day in April 2020. It seemed like perfect timing to start working towards their ambitious objectives: to strengthen multidisciplinary care in the capital Tirana, increase knowledge and awareness of haemophilia across the country and empower the patient organisation. But with cases of COVID-19 on the rise across the small, mountainous country in the Balkan peninsula, the project team had to adapt their plans and find new ways to reach their goals.
“We decided not to focus on what we couldn’t do but instead on what we could achieve,” says Dr Adela Perolla, a haematologist who is leading the NNHF project with dedication and enthusiasm together with Dr Gentiana Qirjako from the Community Centre for Health and Wellbeing. “We began by raising awareness through social media channels like Facebook and were also able to get our message across with a television interview. Our next step was to develop training materials for healthcare professionals to increase knowledge of bleeding disorders across Albania.” Dr Perolla has been working with haemophilia and other coagulopathies for the past 20 years at the University Hospital Centre (UHC) ‘Mother Tereza’ in Tirana.
Outreach and training for healthcare professionals
A first outreach visit to Durrës, a port city west of the capital, was organised in December 2020 with two training sessions held for general practitioners and haematologists. In line with COVID-19 restrictions the groups were limited to 10 participants, with a link provided to open the sessions to a broader online audience. The team is currently exploring the best options to broaden their reach given the ongoing pandemic situation.
“During this past year we realised that improving access to care and, most importantly, providing hope for the future to people with bleeding disorders is more urgent than ever,” Dr Perolla says. “We are finding ways to adapt our project activities, whether through smaller groups, video conferences or webinars on how to help people with haemophilia administer treatment in a timely manner.”
In their first year of activity, the NNHF project team developed specific educational materials for healthcare professionals, from family and emergency doctors to specialists in internal medicine, while in parallel distributing personal protection equipment and food supplies to people in the haemophilia community who were impacted by the pandemic. They look forward to completing further outreach training sessions for healthcare professionals and hope to be able to hold workshops for people with haemophilia and their families in 2021.