Approximately 80 percent of rare diseases are caused by genetic changes; however, genetics is a topic that not all of us are familiar with. This webinar covers the basics of the underlying genetics of rare disease and provides viewers with the strategies and advice to discuss them with the ones they love.
As many patient advocates continue on their journey to become empowered activists, some may learn and want to consider starting a rare disease center of excellence. This webinar covers how this can be done, what the obstacles and challenges are, and whether there are other options viewers should consider.
Children with rare diseases sometimes suffer different obstacles and challenges while attending school. However, there are certain programs and resources (such as 504s and IEPs) available that can help. This webinar covers these and the process by which to obtain them.
Learn all you need to know to qualify and apply! Offered to RARE Foundation Alliance members, which include nonprofit organizations and support groups serving rare patients and families, grants are intended to provide direct assistance to patients.
The purpose of this Webinar is to provide the rare disease community with the opportunity to hear directly from Dr. Kaufmann about her new role, her plans for the Office and most importantly, how she wants to engage with the rare disease community. Questions will be taken from attendees participating in the Webinar and fielded by the moderator, Daniel Levine, producer of Global Genes’ RARECast podcast.
Access to clinical trial data is only given by way of informed consent. However, informed consent is an area that many don’t fully understand. This webinar will cover exactly what informed consent is, the scenarios when it is needed, and what universal consent is.