Meet AIEOP’s Bone Marrow Failure Working Group
Coordinator Francesca Fioredda
Tell us a little bit about your background as Coordinator of the working group?
I have been committed to bone marrow failure since 2000 being one of the main promoters of the Italian NeutropeniaRegistry since its creation in 2004. Starting in 2006, the original “Neutropenia Study Group” incorporated the scientific activities regarding aplastic anemia and progressively other bone marrow failures (BFM) such as: Diamond-Blackfan anemia, dyskeratosis congenita, Fanconi anemia, Shwachman-Diamond Syndrome and autoimmune lymphoproliferative syndrome (ALPS). I have been coordinating the group since 2017 carrying out the high quality scientific work set up by the two previous colleagues.
What is the overall goal of the WG?
The primary goal has been to deepen the knowledge of these rare disorders, trying to reach common definition and management mainly in those presenting with a high degree of deformity. Increased knowledge and shared understanding are able to guarantee equal opportunities for the affected children all over our country.
What has been your WG’s greatest accomplishment?
Thanks to a number of collections and studies performed within the group over time, the overall knowledge on some BMFs has significantly increased and the scientific level has been up-graded being in line with the most important study groups on bone marrow failure worldwide.
What message do you have to the international medical community?
The collaborations and the setting up of registries on rare disorders are at the basis of an evolving knowledge and application of possible new diagnostic and therapeutic tools. We look forward to continuing the work enlarging fields of interest and involving new partners.