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Registration is now open for the 2021 Global Genes RARE Patient Advocacy Summit. This year’s hybrid event will be broadcast live from California September 27-29, and seats are also available to attend the event in person in San Diego.

“Here you will have the opportunity to connect and engage with other members of the rare disease community, while also experiencing the sense of community and belonging that we have so missed,” Global Genes says on its registration page.

Global Genes hosts the summit every year, bringing together rare disease patients, advocates, caregivers, researchers, healthcare professionals and industry stakeholders. Participants learn about the latest developments in rare disease research and best practices in advocating for personal and organizational interests.

The RARE Patient Advocacy Summit 2021 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 members of the community will speak in plenary sessions and lectures on 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 speakers here.

Early bird rates end August 20. Participants can choose to purchase a Summit Loot Bag during the registration process; additional shipping charges will apply.

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

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

On the virtual platform, event recordings will be available within 48 hours of the session. Recordings will also be available on the Global Genes website within a month of the summit. All sessions will be captioned.

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

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

Those interested in becoming a summit speaker can complete the application form here. All speakers receive a full pass to the RARE 2021 Patient Advocacy Summit.

If you would like to attend the summit in person in San Diego, please send an email [email protected]. Space is limited.

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