2022 RARE Patient Advocacy Summit
Rare Life. Bonded Together

September 12-14, 2022
San Diego, CA (and virtually!)

The health and safety of the rare community is of the utmost importance to Global Genes. Before attending, each person should consider the risks associated with traveling to and from and attending an in-person event.

For those unable to attend in person, Global Genes will also offer the conference experience virtually (online) that allows participants opportunities to watch sessions, engage with speakers and other attendees, and network with each other.

Health & Safety Information for In-Person Attendees

Global Genes has set forth the below health and safety guidelines for the 2022 RARE Patient Advocacy Summit. Depending on updates to CDC, WHO, or state guidelines, the below may be subject to change.

Vaccinations: Proof of COVID-19 vaccination must be provided when checking in at the event. Those who cannot receive the COVID-19 vaccination are required to show proof of an exemption.

Those unable to receive the vaccine or who do not have proof of vaccination are required to submit a negative COVID test completed in the last 24 hours when checking in at registration. Global Genes will have rapid COVID tests available at registration for those who may need one.

Masking and Sanitization: All attendees are strongly encouraged to take extra precautions such as wearing a mask and practicing social-distancing guidelines. Global Genes will provide masks for all attendees who may need them at registration and the information desk upon request.

Global Genes will provide sanitizing stations throughout the conference space. Each attendee will also receive a personal bottle of hand sanitizer in their conference bag at registration.

Sharing Your Contact Comfort Level: To help attendees easily communicate their level of comfort interacting with one another, Global Genes will provide color-coded stickers to all on-site attendees to put on their name badges:

• • • Red = Physical Distancing – Greet from Six Feet
    • Blue = Elbows Only
    • Green = Handshakes and Hi-fives

Testing: Global Genes strongly encourages all individuals to be tested for COVID-19 prior to traveling to any event. Individuals who test positive should stay home and attend virtually. If you need to change your registration to attend virtually, or you are on-site and test positive for COVID-19, please email KaylaC@globalgenes.org 

Those unable to receive the vaccine (medical or religious exemption) or do not have proof of vaccination are required to submit a negative COVID test (taken within 24 hours of arrival) when checking in at registration. Global Genes will have rapid COVID tests available at registration for those who may need one.

If you test positive for COVID-19 up to 14 days after returning home, please email KaylaC@globalgenes.org

Waiver: Upon registration, you will be required to sign a health waiver. To review this waiver, please click here.

Other Sensitivities: In order to be respectful of participants with fragrance sensitivities, we ask that everyone attending the RARE Patient Advocacy Summit limit the use of perfume, cologne, Axe, lotions, hair products, or other scented products.

If you have other medical sensitivities, please contact registration while on site and we will do our best to accommodate.

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Watch 2021’s Patient Advocacy Summit here or on our youtube channel.

Watch all 33 recorded meetings and discussions that we’ve separated into easily managed categories: Rare Life & Patent Care, Tactics & Capacity Building, Leadership Skills Lab, and International Discussions. Gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies you can implement to accelerate change.