26 Feb Lifespan Approach to Rare Diseases (webinar)
The Clinical and Translational Science Award’s Lifespan Domain Task Force – Single Disease Work Group is pleased to invite any interested party to attend this webinar.
Objective: To identify gaps in knowledge and the questions that need to be addressed to identify and bridge gaps in data elements and research opportunities for care, transition and outcomes across the lifespan: Lessons from cystic fibrosis and sickle cell disease, focused on transition from adolescent to young adult.
Approach: Conduct a recorded webinar to collect data from experts and consumers in each of these fields. A moderated presentation/discussion will be held with 1-2 experts and consumers from each of the 2 fields. They will be asked to discuss their perspectives regarding the transition phase, including resources and barriers to the process and the outcomes.
Intended audience: Researchers, providers and caretakers for these or other single diseases for which transition is an important aspect of the lifespan of these conditions.
Outcome: A report will be written to be based on the webinar, additional expert input and review of the medical literature.
Register: To register for this webinar, please visit the webinar’s registration page.
