By Michelle Pascucci
Rare Disease Day in the United States began in 2009 and the plans for Rare Disease Day in 2010 are taking off. The National Organization for Rare Disorders (NORD) has launched a website to follow the events going on around the world on February 28, 2010. The goal is to raise awareness about the millions of rare diseases that exist, including hemophilia. This is an important step towards advocacy and awareness regarding the unique challenges and needs of individuals with rare diseases.
The focus for 2010 is “Bridging Patients and Researchers,” which hopes to promote collaboration between patients and researchers, bring awareness and interest to the scientific community in studying rare diseases, and to empower patients to engage in and advocate for research of their disease.
HFA supports Rare Disease Day 2010 and hopes you will join us in celebrating that day of recognition. For additional information on how to do so please visit http://rarediseaseday.us/. Please join HFA in participating in this important campaign to spread awareness and share information about hemophilia.