Q: What exactly makes a disease “rare”?
BrandStar Entertainment: According to the medical community, a rare disease is one with a patient population of less than 200,000 people. Global Genes has stood tall as an advocacy support group that offers valuable resources and educational tools for families who have seen their lives turned upside down by rare diseases.
Q: Where did Global Genes fit into the conversation on The Balancing Act?
BrandStar Entertainment: Global Genes founder and president Nicole Boice was on hand to discuss this topic. She informed viewers about how rare disease affect so many families and offered ideas about how to connect with others and where to search for the latest treatments. Global Genes is eager to help families cope with the challenges of rare diseases and ease patient suffering.
Q: How many people are living with rare diseases worldwide?
BrandStar Entertainment: In a recent survey, 30 million people reported they were currently dealing with some form of rare disease. Many who are dealing with rare diseases are children. The consequences can be devastating in many cases.
Q: How can this series raise awareness about the impact of rare diseases?
BrandStar Entertainment: It will help to empower and educate families and the medical community at large. The inaugural Rare Disease Day was observed in Canada and Europe in 2008. Now observed on the final day of February each year, Rare Disease Day is an opportunity to share the word about rare diseases. These outreach efforts have resulted in more than 1,000 events since 2008.
