Thank you for your interest in the Global Genes LIVE! A RARE Patient Advocacy (un) Summit. Below you will find answers to most of your questions. If you do not find an answer to your question, please do not hesitate to reach out to us at [email protected].

Download FAQs




Global Genes Swag Bag

2020 RARE Champion of Hope Awards

Sponsorship Information



What are the conference dates?

  • The Global Genes LIVE! A RARE Patient Advocacy (un)Summit will take place on September 15-25, 2020. You can view the agenda here.

What is the format of the event?

  • This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming.
    • Week 1 of the live event will be open to all audiences and available on Facebook Live. See the schedule of events for more details.
    • Week 2 of the event will be a series of keynote speakers, educational sessions and activities. Registration is required for these events. See the schedule of events for more details.

What type of content and sessions can I expect to see?

  • Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and strategic ways to accelerate change.
  • There will be different types of sessions offered throughout the event including, keynote addresses, educational sessions, and rare disease awareness activities.

What virtual platforms will the event be utilizing?

  • These are the virtual platforms we will be using for the following sessions:
    • Week 1: Facebook Live. After the event is over, all sessions will be made available in Global Genes’ YouTube channel.
    • Week 2: The event platform will be hosted throughCvent and CrowdCompass. All keynotes, sessions, and awareness activities will be hosted through On24.

What is included in registration?

  • Included in your registration is access to all Global Genes LIVE! sessions. Please note that you will need to select all of the sessions you would like to attend within your registration in order to receive the access links. If you do not select a session at the time you register, you may miss important information regarding the session. If you wish to modify your registration and include and remove sessions please see “how do I modify my registration“.

What equipment will I need to participate virtually?

  • You will need an internet connection and a computer, tablet, or smartphone. Sessions are best viewed on Google Chrome and Mozilla Firefox.

How do I register for sessions?

  • Within the registration you will have the opportunity to select all of the sessions you would like to attend.

Are sessions live or recorded?

  • Sessions will be hosted live and provide opportunities for brief Q&A sessions throughout.

What if I miss a live session? 

Will speaker slides be available?

  • After the event is over, all speaker slides will be made available in CrowdCompass, the event mobile app.

Am I able to ask a speaker or presenter questions?

  • There will be a digital Q&A box available in each session where you can type any questions you have as they come up.

What if my question is not answered during the live session?

  • If your question is not answered live, you will receive a response and answer to your question within 48 hours from either the speaker or a Global Genes staff member.

How do I access the event after registering?

  • After completing your registration, you will receive a link via email prior to the event for easy access.  Please note, when clicking the link you may be prompted to enter the email address associated with your registration before entering the event.


How do I register?

  • You can register for Global Genes LIVE! A RARE Patient Advocacy (un) Summit here.

What is the cost to attend/How much is the registration fee?

  • Patient/Patient Advocate: $25 (complimentary registration code available)
  • Government/Academic/Researcher: $75
  • Corporate/Industry: $350
  • Corporate Alliance discount, 10% off ($35); (2) codes per company

Who is eligible for a complimentary registration code?

  • Patient/Patient Advocate registration type only.

How do I get a complimentary registration code?

  • In order to receive a complimentary registration code, you must complete the complimentary registration code form.

How do I modify my registration?

  • Go to this link.
  • Click on “Already Registered?” on the top right corner.
  • Enter your email you used to register and your confirmation number found in your registration confirmation email and then click OK.
  • Click on the “Modify Registration” button.

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

What is the registration cancellation policy?

  • A 25% refund will be issued prior to September 3,  2020. After September 3, 2020 there will be no refunds issued. If you would like to cancel your registration, please send us an email [email protected].

When will I receive my refund?

  • If you cancel and are entitled to a refund, you can expect that processing time for the refund will be within 10-12 business days. All refunds will be issued to the original payment type used to register.

Can I transfer my registration if I can no longer attend?

  • Yes, you can transfer your registration. To transfer your registration:
    • Go to this link.
    • Click on “Already Registered?” on the top right corner.
    • Enter your email you used to register and your confirmation number found in your registration confirmation email and then click OK.
    • Click on the “Transfer Registration” button.

How do I register as a speaker?

  • Speakers will receive instructions once they are confirmed with registration information. Speakers receive a full conference pass for their contribution to the Global Genes LIVE! A RARE Patient Advocacy (un)Summit.

Global Genes Swag Bag

Are you going to have a swag bag?

  • Yes, thanks to our sponsors we have been able to provide all attendees with an option to get a swag bag. 

How do you get the swag bag?

  • Please visit this website to order your swag bag.

What is included in the swag bag?

  • Please visit this website to see a complete list and photos of the swag bag items.

Why is there a charge for the swag bag?

  • The $15 is to cover the costs of shipping and other fees associated with producing and shipping the swag bag. Also, for every swag bag purchased, we’ll donate $5 of your $15 purchase to support rare disease foundations through our RARE Patient Impact Grants.

Can you ship the swag bag outside of the United States?

  • Unfortunately at this time, we are unable to ship outside of the United States.

2020 RARE Champion of Hope Awards

What are the RARE Champion of Hope Awards?

  • The RARE Champion of Hope Awards program celebrates, honors and recognizes Champions of Hope in the rare disease community. It is a time we stand together as a  community to support those who inspire us to do more, to do better and to help positively impact patients and their families around the globe. Award winners are honored and will receive their awards at our RARE Champion of Hope Celebration.

When will the 2020 RARE Champion of Hope Celebration take place?

  • The 2020 RARE Champion of Hope Celebration will take place in November. More information will be available soon.

When do nominations open?

  • Nominations will open at the end of July. More information on how to submit nominations will be available soon.

Sponsorship Information

Who can I contact for information about sponsorship opportunities for this event?

  • For information about sponsorship opportunities, please contact Kathy O’Connor at [email protected] and Michael Corrente at [email protected].  If you are already a sponsor and have any questions about this new virtual event, please feel free to reach out to Kathy and Michael as well for more details. Thank you for your support!

What sponsorship opportunities are available?


Will there be a mobile app?

  • Yes, CrowdCompass.

Will there be a first time attendee orientation? 

  • Yes, more information will be available soon

Are you offering continuing education units (CEU)?

  • No

Are you accepting poster abstracts? 

  • No, this year there will not be a poster element to the Summit.

What is your privacy policy? 

  • Please review our terms and conditions here.

What is your event Code of Conduct?

  • Please review our Event Participant Code of Conduct here.