Announcing our NNHF Project of the Year 2022
Congratulations to Dr Ciprian Tomuleasa and the team for transforming diagnosis and care in north Romania, and creating a national registry for bleeding disorders
The Novo Nordisk Haemophilia Foundation is pleased to announce that the Project of the Year award for 2022 is awarded to our Romania project team. The team, from the Romanian Society of Haematology and from “Iuliu Hatieganu” University of Medicine and Pharmacy in Cluj-Napoca, led by clinical haematologist Dr Ciprian Tomuleasa demonstrated outstanding dedication and project management in achieving sustainable impact for people living with haemophilia and allied disorders in Transylvania, and across the country. Key achievements of the one-year project include the training of lab personnel and the accreditation of a diagnosis laboratory within the MedFuture Research Centre for Advanced Medicine at the “Iuliu Hatieganu” University of Medicine and Pharmacy in Cluj-Napoca, as well as the establishment and implementation of a national online registry for bleeding disorders.
Before the present project, the main specialist medical facilities for bleeding disorders were centred around Bucharest in the south and Timisoara to the west. Therefore, people with haemophilia especially from the north of the country were obliged to travel great distances in order to obtain proper diagnosis and care. This has changed dramatically since the project began thanks to the strengthening of diagnostic capabilities in the regional capital of Cluj-Napoca, situated in the north-west side of the country, along with training of 150 healthcare professionals and increased standardisation of haemophilia care.
Ludovic Helfgott, Foundation Council President, said: “We were impressed by the Romania team’s inclusive approach in working with the two patient organisations as well as reaching out to a highly targeted network of healthcare professionals in order to increase the impact of their project. Their achievements are all the more remarkable given the challenges of starting a new project in the midst of an ongoing pandemic and achieving their ambitious goals in a relatively short period of time.”
The team successfully established a national online registry for people with bleeding disorders, then gained the support of eight major hospitals in Bucharest, Timisoara, Cluj-Napoca, Baia Mare and Iasi. Despite the challenges of training hospital personnel remotely on the new platform to ensure a uniform approach to data entry, more than 500 patients have already been registered.
Communication and perseverance
“I would say that perseverance and communication were key to the success of our project,” said Dr Tomuleasa, interviewed in the NNHF podcast ‘Impacting Care’. “My advice to anyone facing similar challenges would be, no matter how difficult or impossible it seems, never give up. There is always a way. In our case, communicating with different stakeholders and healthcare professionals in other centres enabled us to achieve shared goals.”
Throughout the project, the team leveraged great support from the “Iuliu Hatieganu” University of Medicine and Pharmacy where the diagnosis laboratory is currently established and from many key medical advisors including Prof Daniel Coriu, the leading haematologist from the Carol Davile University School of Medicine and Fundeni Clinical Institute, both in Bucharest. As soon as travel restrictions were lifted, two laboratory clinicians were sent for training abroad in St. Etienne, France and Krakow, Poland.
Within the framework of the project five scientific papers were published, one in partnership with the Romanian Society of Hematology on current therapeutic approaches in managing haemophilia, another focusing on mobile health technology for personalised therapy. Awareness raising and advocacy activities organised by the team amongst healthcare professionals and authorities have resulted in expanded healthcare insurance reimbursement for the treatment of bleeding disorders beyond haemophilia such as von Willebrand disease. Most importantly, the standard of haemophilia diagnosis and care have been greatly improved, especially in the north, impacting the lives of hundreds of people who live with bleeding disorders in the country.
Congratulations to Dr Ciprian Tomuleasa, to the Romanian Society of Haematology, the “Iuliu Hatieganu” University of Medicine from Cluj-Napoca and everyone on the team who helped make this ambitious project a success!
Learn more about the project, listen to the ‘Impacting care’ podcast episode, featuring Dr Ciprian Tomuleasa
Learn more about how we recognise the remarkable each year with the NNHF awards.