Lunch & Learn Topics: (Discussion groups are 12:40-1:40pm)
*session offered on both days, please register for one
Cultures of Inclusion in the Workforce
Discuss available resources for employers looking to promote work models focused around hiring individuals with disabilities/rare diseases.
How to Launch a Rare Disease Advisory Council (RDAC) in Your State *
RDACs give the rare community a stronger voice in state government. Learn whether one exists in your state and how you can get involved.
Launching a Patient Registry *
Through examples of the IAMRARE Registry Program, learn how to inform and shape medical research and translational science for rare diseases by launching high-quality, customized registries.
NIH Rare Diseases Clinical Research Network (RDCRN)
Learn more about the current initiatives of the RDCRN, aimed at bridging the gap between rare diseases and research.
Patient Input on Clinical Trial Design *
Join this facilitated discussion on how patients and industry partners can work together to keep patient needs top of mind during clinical trial design.
Patient Organizations as Patient Navigators
Discuss the role advocacy groups can play in helping their patients overcome barriers to care through information, resources, and support specific to rare diseases.
Reimagining the Future of Rare Disease Diagnosis
Diagnosis remains one of the key challenges for the rare community but advances in testing and collaborative efforts to address the challenges offer hope for the future.
Respecting Our Roles: Patient Organizations & Industry
Explore how patient organizations and industry partners can successfully work together to achieve common goals.
Taking Your Grant Writing to the Next Level
Learn from a certified grant writer how to elevate your grants through impactful objectives, evaluation and data.
Teaching Undergraduate Students About Rare Diseases
Learn more about the course created to generate interest and provide sufficient background to the multi-disciplinary roles within the rare disease field