"Rare Diseases, afflicting about 30 million worldwide, is an exacerbated example of lack of research, pricing, accessibility and affordability."
I am Jorge Buenaventura, an avid runner from the Philippines. I have taken the advocacy of the National Organization for Rare Diseases (NORD) to help in the understanding, research and treatment of rare diseases. This had to start with my own awareness of how underserved this prevailing health challenge has been. My lifetime dream of running the Boston Marathon in 2020 cannot be more exciting as I can now run for a cause that I have grown to be passionate about. The fund we raise will be used for research and treatment.
With your help, I will join the Run for Rare (R4R) team. I will run the Boston Marathon with you!