World Haemophilia Day - Socially distant but still united with patients
Now more than ever, Kedrion is renewing its commitment to those who live with this rare disorder
Kedrion Biopharma is proud to reaffirm its closeness to the patient community on the occasion of World Hemophilia Day 2020, which takes place on April 17.
Following the postponement of all scheduled events due to the COVID-19 emergency, this year the World Hemophilia Day celebrations, whose slogan is "Get+Involved," have been imbued with new, greater value; a virtual bringing together of Italian and international institutions and associations committed to promoting initiatives dedicated to improving the quality of life of patients who, together with their families and communities, have to live with rare diseases such as Hemophilia.
Contributing to this goal makes us proud and now more than ever encourages us to work tirelessly in support of the patient community, to ensure continuity and quality of our life-saving therapies.
Despite the current difficulties, we are committed to working alongside patient associations and the medical-scientific community in Italy by supporting initiatives which place people affected by Hemophilia at the center of the treatment course, such as the #KoalaACasaTua service; the multi-disciplinary course "Words in Hemophilia: towards Patient Engagement"; and "ProPer" (Personalized Prophylaxis in Hemophilia), the training and continuous updating project for clinicians, launched in 2019 and aimed at promoting throughout Italy discussion on the personalization of Hemophilia treatment, through a series of itinerant meetings which will continue in the coming months, albeit remote.
For years we have been supporting, in Europe and in the rest of the world, the PARTNERS project of the European Hemophilia Consortium (EHC) and the GAP (Global Alliance for Progress) program of the World Federation of Hemophilia in order to improve access to treatments for coagulation disorders. We have also been working alongside the Italian Regions and the Italian National Blood Center (CNS) on ethical projects for the humanitarian donation of coagulation factors to disadvantaged countries, the last of which was for Albania.
With this same aim in mind, we intensified our widespread commitment during 2019 in countries such as Turkey, Mexico and Colombia. Here we supported educational events geared towards the local medical community and designed to strengthen the knowledge of coagulation disorders by focusing the debate on the role of replacement therapy in the treatment of hemophilia; the ultimate goal being to improve diagnosis thereby ensuring fairer and more sustainable procurement plans.
Finally there was “EIGHT”, the first educational initiative dedicated entirely to Factor VIII which in 2019, with our unconditional support, launched its website and relative social media profiles in order to share information about the project and to raise awareness by featuring the voices of the world-leading Hemophilia experts.