On March 6th, wednesday, the story of The Medulloblastoma Initiative (MBI) was presented to the Permanent Council of the OAS (Organization of American States) in Washington D.C., during the session dedicated to World Rare Disease Day.
MBI results from Fernando’s approach to Dr. Roger J. Packer, from Children’s National Hospital in Washington D.C., one of the world’s leading specialists in pediatric brain tumors worldwide. Today, MBI is a philanthropic initiative that finances a consortium with 13 research laboratories, bringing together renowned scientists from around the world — from the USA, Germany, and Canada.
For this important meeting, MBI was the organization chosen by the OAS to represent the fight of the 300 million people affected by rare diseases around the world.
During his speech, Fernando presented MBI’s unique approach to philanthropic engagement and will shed light on urgent topics, such as the toxicity of available treatments for the most common type of pediatric brain tumor and the need for funding for scientific research. It also invited governments, the scientific community, and civil society itself to reflect on the relevance of these themes in the context of rare diseases.
It was a great honor for MBI to speak on behalf of the millions of people with rare diseases at this event.
