There are over 6,000 rare diseases identified worldwide. Although each disease is individually rare, about 30 million people are living with a rare disease in the U.S. alone.
Approximately 80 percent of rare diseases are caused by genetic changes, but genetics is a topic most are not familiar with. When you have a child with a genetic condition, how do you explain this to your family members? How do you go about informing teachers and classmates about your child’s condition? What do you say?
Global Genes is hosting a Rare Webinar April 1st at 11:00am PT / 2:00pm ET to help those affected by rare disease better engage in conversations with their family and friends about genetic disease. This webinar introduces the genetics of rare disease, but primarily focuses on how one can take this information to inform others: close family, distant relatives, friends, co-workers, neighbors, teachers, and others within the community.
Panelists will share strategies they have used to explain genetic disease, challenges they faced, and resources they have found helpful. Jenna Miller, one of our own genetic counselors, will be one of these panelists!
Head over to the Global Genes site to learn who the other panelists are and to register for the webinar today!