On Wednesday, March 6, 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 was the result of Fernando’s approach to Dr. Roger J. Packer of Children’s National Hospital in Washington, D.C., one of the world’s leading experts in pediatric brain tumors. Today, MBI is a philanthropic initiative that funds a consortium of 13 research laboratories, bringing together renowned scientists from around the world—from the U.S. to 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 worldwide.
During his speech, Fernando presented MBI’s unique approach to philanthropic engagement and discussed pressing issues such as the toxicity of available treatments for the most common type of pediatric brain tumor and the need for funding for scientific research. He also invited governments, the scientific community and civil society itself to reflect on the relevance of these issues in the context of rare diseases.
It was a great honor for MBI to speak on behalf of millions of people living with rare diseases at this event.
