Register Now for Global Genes’ RARE Patient Advocacy Summit

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by Shayna Korol |

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Global Genes 2021 RARE Patient Advocacy Summit/epidermolysisbullosanews.com/registration now open

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego.

“Here you’ll have the opportunity to connect and engage with others in the rare disease community, while experiencing the sense of community and belonging we’ve missed so much,” Global Genes states on its registration page.

Global Genes holds the summit each year, bringing together rare disease patients, advocates, caregivers, researchers, healthcare professionals, and industry stakeholders. Attendees learn about the latest developments in rare disease research, and best practices for personal and organizational advocacy.

The 2021 RARE Patient Advocacy Summit will feature a variety of events, workshops, and networking opportunities for the rare disease community. Sessions will focus on three themes: living with a rare disease and patient support, tactics and capacity building for advocates, and leadership skills labs.

Patients and other community members will speak at plenary and keynote sessions about their stories and developments in rare disease research. At the end of each day, there will be “Office Hours” and networking sessions. The summit agenda is available here and a confirmed list of featured speakers here.

Early bird registration rates end Aug. 20. Participants can choose to purchase a summit swag bag during the registration process; additional shipping fees will apply.

Registrants will have access to all 2021 RARE Patient Advocacy Summit sessions other than freshman orientation. The freshman orientation session can be added during the registration process at no additional cost.

A digital question and answer box will be available in each session. According to Global Genes, if a question is not answered during the livestream, the person asking will receive a response within 48 hours from the speaker or a staff member at Global Genes.

On the virtual platform, event recordings will be available within 48 hours after the session. The recordings will also be available on Global Genes’ website within a month after the summit. All sessions will have closed captioning.

A detailed event guide will be emailed to registrants before the summit with information on how to access and navigate the virtual platform. The summit will take place on Digitell, which uses Zoom as its broadcasting tool. According to the organizers, the sessions are best accessed with Google Chrome or Mozilla Firefox.

The link to access the event will be sent during the week of Sept. 20.

Those interested in becoming a speaker at the summit can fill out the inquiry form here. All speakers receive a full conference pass to the 2021 RARE Patient Advocacy Summit.

If you are interested in attending the summit in person in San Diego, please email [email protected]. Space is limited.