13 Sep Connect, Learn, and Inspire at the RARE Advocacy Summit
Global Genes RARE Advocacy Summit
Join Undiagnosed Diseases Network Foundation at the Global Genes RARE Advocacy Summit (formerly known as the Patient Advocacy Summit) September 19-21 at the Sheraton San Diego Hotel & Marina. This event aims to unite stakeholders from various sectors within the rare disease community, focusing on patients and patient advocates. It will be a platform to exchange best practices, foster connections and community, and delve into cutting-edge scientific advancements.
UDNF will be hosting a track on Empowering the Rare Individual with a session titled Managing Life Without a Diagnosis where the panel will address challenges, questions, and opportunities for those living without a specific diagnosis. They will explore genetic testing basics, research studies, support services, and finding community. As an audience member, you’ll gain strategies to empower yourself or a family member in navigating life without a diagnosis.
When you’re not attending sessions, meeting with experts, and hearing from our renowned keynote speakers, you can take in the breathtaking view of the bay and the dazzling views of the marina or downtown skyline.
Outside of our session, you’ll have the opportunity to take part in:
- Sessions following four key tracks: Advocacy Empowerment, Community & Capacity Building, Becoming a Research-Ready Organization, and Science and Tech Innovation.
- Rare Disease MasterClasses powered by experts who will provide a deeper understanding of the science innovation behind the various disease modalities relevant for rare diseases and why.
- Opportunities to meet one-on-one with experts during Expert Office Hours.
- Networking opportunities designed to connect you with other organizations that share similar goals, disease pathways, aligned interests, research interests, and more.
- Small working groups and round table discussions led by experts highlighting specific agenda topics in more depth.
- Fun! Early morning yoga, game shows, and time to enjoy the spectacular view anc water activities surrounding the event space.
- Mentor/Mentee opportunities: Back by popular demand is Freshman Orientation. When you register for the event, you’ll have the opportunity to sign up as a mentor to be a guide for someone attending for the first time or as a mentee if this is your first time attending! Once you’ve signed up, you’ll receive an email closer to the event with more information.