FAQs

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2021 RARE On The Road FAQs

GENERAL

What is RARE on the Road?


Since 2017, Global Genes and the EveryLife Foundation for Rare Diseases have partnered to host RARE on the Road – A Rare Disease Leadership Tour, bringing critical education and insights to rare disease patients, caregivers, and other advocates around the country.

Each year, we select new cities to help build and activate the next generation of advocacy leaders and work to connect them with others in their local area.

With feedback from the community, RARE on the Road 2021 will consist of one interactive webinar, open to all who wish to attend, regardless of their geographic location, and three virtual, state-specific meetings focusing on issues and resources relevant to residents in Nevada, Florida, and Illinois.

When is the Rare Disease Leadership Interactive Webinar?


This year’s Rare Disease Leadership Interactive Webinar will take place on Tuesday, March 23, 2021 from 11:00am – 1:30pm ET (8:00am – 10:30am PT).

When are the virtual State-Specific Training and Networking events?


There will be three virtual State-Specific Training and Networking events:
Tuesday, May 4, 2021 – Nevada (10:00am – 12:15pm PT)
Tuesday, May 11, 2021 – Florida (10:00am – 12:15pm ET)
Tuesday, May 18, 2021 – Illinois (10:00am – 12:15pm CT)

RARE DISEASE LEADERSHIP INTERACTIVE WEBINAR

What knowledge can I expect to gain from the interactive leadership webinar?


Participants of the Rare Disease Leadership Webinar will engage in interactive tutorials on how to tell their rare story and how to get started in advocacy. This portion of the event will feature special guest speakers, including a rare disease patient and policy expert, there to provide insights for amplifying the patient voice from anywhere in the U.S.

For more details about the interactive webinar, click here to view the webinar agenda.

Who can and/or should participate in the interactive leadership webinar?


Whether you’re new to the rare disease community or a “seasoned veteran,” this interactive webinar is for you!

The Rare Disease Leadership Webinar is geared toward all rare disease community members who want to learn how to tell their rare story, make an impact in the lives of others, and connect with fellow rare disease community members.

All are welcome to register for this webinar, on March 23rd, as the information provided will be relevant to all rare disease community advocates, not just those residing in Nevada, Florida, and Illinois.

What virtual platform will the interactive webinar be hosted on?


The Rare Disease Leadership Webinar will be held on the user-friendly webinar platform, Zoom. Prior to the webinar, registrants will receive a link via email with detailed instructions for access.

What equipment will I need to participate in the webinar?


Participants will need an internet connected laptop, desktop computer, tablet, or smartphone. We also recommend installing “Zoom Client for Meetings” to the specific device you will use to participate in the webinar (https://zoom.us/download). During the webinar, only speakers and/or presenters will be seen and heard. You do not need a camera or microphone to participate.

Will closed captioning be available?


Yes! In an effort to make this event as accessible as possible, English language closed captioning will be available during this year’s Rare Disease Leadership Webinar.

Will Spanish translation be available?


Yes! Real-time Spanish translation will be available during this year’s Rare Disease Leadership Webinar through the same application used to provide English language closed captioning. Easy instructions will be made available during the webinar for those who wish to access the Spanish translations.

Will the information presented during the webinar be live or recorded?


The webinar on March 23, 2021 will be live and provide opportunities for brief Q&A sessions from the audience throughout.

How can I ask the speaker or presenter questions during the webinar?


There will be a digital Q&A box available within the Zoom webinar platform where participants can type any questions they have throughout the meeting. If your question is not answered live on the webinar, the speaker or presenter will follow up with answers to your questions via email after the event.

In case I cannot attend the entire webinar for any reason, will the presentations be recorded for later viewing?


Yes, the Rare Disease Leadership Webinar will be recorded and available for viewing post-event. A link to the webinar recording will be emailed to all registrants after the event on March 23rd and will also be made available on the RARE on the Road website, here.

How can I network with other attendees during the interactive webinar?


During the Rare Disease Leadership Webinar, a chat box will be available for participants to network and connect with one another. Engagement during the webinar is key!

The webinar is a forum for learning and we encourage participants to discuss the topics at-hand, ask questions, share resources, and provide insights with one another to make this informational session as fruitful as possible.

VIRTUAL STATE-SPECIFIC TRAINING AND NETWORKING EVENTS

What knowledge can I expect to gain from the virtual state-specific training and networking event(s)?


During the virtual state-specific training and networking event(s), participants residing in the event location(s) will have an opportunity to virtually network with other local rare disease community members while learning about relevant resources and topics important to that state. This event offers participants the opportunity to share ideas, gain insights, and form lasting relationships with their local peers.

Registration is limited to residents within the state where the event takes place.

Who can and/or should participate in the virtual state-specific event(s)?


Registration for each state-specific training and networking event requires residency within the state being spotlighted.

Registration will be limited to the following:
May 4, 2021 – Nevada Virtual Training and Networking Event – Nevada residents ONLY
May 11, 2021 – Florida Virtual Training and Networking Event – Florida residents ONLY
May 18, 2021 – Illinois Virtual Training and Networking Event – Illinois residents ONLY

While each event listed above is open to new and established members of the rare disease community alike, we do ask that you attend the Rare Disease Leadership Interactive Webinar on March 23, 2021 before attending a virtual state-specific event.

This event is designed for patients and patient advocates. Corporate members can register to attend, but participation may be limited to specific preservations to preserve the events’ intent. Discussions of any corporate agendas will not be permitted.

What virtual platform will the state-specific event(s) be hosted on?


Each state-specific event will be held on the user-friendly virtual meeting platform, Zoom. Prior to the webinar, registrants will receive a link via email with detailed instructions for access.

What equipment will I need to participate in a state-specific event?


Participants will need an internet connected laptop, desktop computer, tablet, or smartphone. We also recommend installing “Zoom Client for Meetings” to the specific device you will use to participate in the webinar (https://zoom.us/download). During each state-specific event, everyone can be seen and heard, so please be sure to keep your microphone muted when you’re not speaking. We also ask that you have your camera ON so that we can make this as close to an in-person meeting as possible.

Will closed captioning be available?


Yes! In an effort to make these events as accessible as possible, English language closed captioning will be available during each state-specific event.

Will Spanish translation be available?


Yes! Real-time Spanish translation will be available during each state-specific event through the same application used to provide English language closed captioning. Easy instructions will be made available during the meeting for those who wish to access the Spanish translations.

Will the information presented during the state-specific event(s) be live or recorded?


Each state-specific virtual training and networking event will be live. Designed to be a mix of short presentations and full-group conversations, engagement is key!

These events are a forum for connection and learning. We encourage participants to discuss the topics at-hand, ask questions, share resources, and provide insights to make the meeting as fruitful as possible. A chat box will be available, and we also encourage participants to share their thoughts verbally when possible.

How can I ask a speaker or presenter questions during the state-specific event?


Questions may be asked verbally or in the provided digital chat box.

In case I cannot attend the entire state-specific event, will the presentations and discussions be recorded for later viewing?


No, the state-specific training and networking events will not be recorded for viewing post-event. If for any reason you are unable to join for the entire session, please feel free to reach out to the RARE on the Road events team with any questions you have and we will do our best to provide you with additional details and resources where possible.

REGISTRATION

How do I register for RARE on the Road 2021?


Registration is closed for the Rare Disease Leadership Interactive Webinar. To view a recording of this year’s webinar, click here.

Registration for the State-Specific Training and Networking Events is now open, here.

Note: registration for these state-specific virtual events is limited to residents within the state(s) being spotlighted.

And thanks to the generous support of our sponsors, participants of the state-specific events will receive a RARE Care Package in the mail containing a RARE on the Road t-shirt and other merchandise. To receive a physical RARE Care Package, you must attend the event. RARE Care Packages will be mailed out after the event and attendance will be checked prior to shipping.

Is there a deadline to register?


Registration deadlines for each state-specific event are as follows:

Nevada Virtual Training and Networking Event – closes May 3, 2021 at 11:59pm ET
Florida Virtual Training and Networking Event – closes May 10, 2021 at 11:59pm ET
Illinois Virtual Training and Networking Event – closes May 17, 2021 at 11:59pm ET

Is there a registration fee for RARE on the Road 2021?


To help the continued efforts of providing opportunities for the rare disease community to connect, we do request a nominal registration fee of $25.00 for the State-Specific Training and Networking Events. If you are unable to financially cover the cost of this registration fee, you can select to waive the fee on your registration form.

How can I update or make a correction to my webinar registration?


To modify your webinar registration:
Go to the webinar registration page, here, and click the “Already Registered?” button in the top right corner.
Enter your email address and confirmation number.
Scroll to the bottom of the page and click on the “Modify Registration” button.
Make corrections and changes as needed.

Can I transfer my webinar registration to another participant if I can no longer attend?


Yes. If you’d like to transfer your registration to another participant, please send us an email at events@globalgenes.org with your substitution request. In the email, we ask that you provide the following information:
The event name
Your full name & email address used to register for the event
The full name & email address of the person you would like to transfer the registration to

I lost my registration confirmation. How can I have my registration confirmation resent to me?


Please send us an email at events@globalgenes.org to request your registration confirmation details. Be sure to include the following information in your email:
The event name
The full name and email address used to register for the event

What is the registration cancellation policy for the Rare Disease Leadership Interactive Webinar?


Registration fees are non-refundable. If you would like to cancel your registration, please send us an email events@globalgenes.org. As a reminder, if you are not able to financially cover the cost of the registration fee, you can select to waive the fee on your registration form.

SPONSORSHIP INFORMATION

Who can I contact for information about sponsorship opportunities for RARE on the Road 2021?


For information about sponsorship opportunities, please contact our sponsorship team:
Ted Brasfield – tbrasfield@everylifefoundation.org
Elissa Taylor – etaylor@everylifefoundation.org
Kathy O’Connor – kathyo@globalgenes.org


If you are already a sponsor and have any questions about this newly virtual event, please feel free to reach out to the sponsorship team as well for more details.

OTHER

My question is not listed here. Whom do I contact?


Please reach out to events@globalgenes.org for additional questions.